“The Reunion”

Me in 1987 sitting in front of a KayPro 2000 laptop in my office.

In 1986 I wrote an award-winning article that was published in the September 1987 issue of “Indianapolis Monthly Magazine“. The tone of the article is a bit melancholy compared to how I am these days but it reflected how I felt at the time. Click here to read the back story of how this article was written, how it was published and the journalism awards that it won. At the bottom is a YouTube video of the VHS tape that I shot at the reunion. The magazine also published a sidebar piece that was written by a staff writer for the magazine. It was based on interviews with me and neuromuscular disease researcher Dr. Charles Bonsett. It talks mostly about what is muscular dystrophy. Even though in the article I point out I don’t have traditional muscular dystrophy, at the time this was written I didn’t know what kind I had. So the sidebar is highly inaccurate as it relates to me. You can read it anyway because this stuff about traditional muscular dystrophy is accurate (or was that the time). I’ve also included links to current information about my type of neuromuscular disease Spinal Muscular Atrophy Type 2. You can read the sidebar here.

The Reunion
Chris Young


It began just over one year ago with an invitation in a small hand-addressed envelope. The end result has been a serious re-evaluation of my life goals.

Although it can be an emotionally risky exercise, often a person needs to take a look back at his life in broad terms to remember where he has been, how he has changed or failed to change and how he can proceed with his life with some sense of purpose. I’ve just been through such an exercise.

Inside that little envelope was an embossed card which read, “You are invited to an Open House at James E. Roberts Public School #97 from 2 p.m. to 5 p.m. on May 18, 1986 commemorating 50 years of educating handicapped students in Indianapolis. And on the occasion of the closing of James E. Roberts School.”

The school where I spent 13 years of my life and where I had not visited in 13 years, was being closed. I looked forward to the opportunity to visit the school one last time. I needed to say a fond farewell to a building full of wonderful memories of the early years and to forgive and forget the memories of the later years.

I was born July 12, 1955, with a hereditary form of muscular dystrophy. [NOTE: At the time this article was written I did not know the exact name of my disease. I was later diagnosed with Spinal Muscular Atrophy Type 2] Ironically, that summer an event occurred which began to make the Roberts school obsolete. Jonas Salk began widespread use of his polio vaccine and the disease promptly disappeared. Indianapolis Public Schools built the school in 1935 to educate the large number of children who struggled with the effects of polio, rheumatic fever and other diseases. It became a showplace for special education.

I was enrolled at Roberts School’s kindergarten at age 5 and continued there through high school. The building is part of who I am and why I think, feel and act the way I do.

High school photo of Rosie. Did not appear in the original article.

It was with great anticipation that I awaited the reunion with old friends and teachers. I especially looked forward to seeing my old girlfriend, Rose Ellen Shewman — the first true love of my life. From my crush on her in seventh grade, through the “puppy love” and heartbreak of eighth grade and the true friendship that developed in high school, Rosie always has been my fondest memory.

For the first few years after graduation, we kept in touch by phone, but I lost track of her from about 1975-1983. A few years ago I found out where she lived and gave her a call. At that time she was still single and lived alone in an apartment in Greenwood. It was good to hear her voice again, but our mutual promises to get together “soon” never were fulfilled.

Although Rosie wasn’t my date at the senior prom, she agreed to let me take a picture with her.

If Rosie was as lonely as I, perhaps, as we had done in high school, we could find comfort together. The gathering at our alma mater might at least be the reopening of our old friendship if not the rekindling of our old romance. I called her a few days prior to the reunion.

Her new husband answered the phone.

When the day arrived for the open house at Roberts School, I gathered up my video camera mounted on my motorized wheelchair to record sights and faces of my past. I rolled into the school auditorium and fought through a crowd of alumni, staff, teachers and family rushing to and fro as we all spotted old friends across the room.

Some of the teachers are not as enthusiastic about the closing as I. One retired teacher voiced her concerns to me over the closing of Roberts. “I’m not so sure this ‘mainstreaming’ is such a good idea,” she said.

“As one who has seen both sides,” I replied, “I have faith it can and does work.” My last three years of high school were spent going half day to Northwest High School in my neighborhood and half day to Roberts.

She feels that I’m an exception. “You were always such a bright boy,” she would say. It’s true that the typical Roberts student of recent years probably has varying degrees of mental handicaps along with the physical problems. However, the students with mental handicaps benefit from having their special classes housed in a building with regular students. Communities that had no special education programs were forced by a 1969 law to establish them. Most of them have chosen mainstreaming and it works. With Roberts closed, mainstreaming will happen more and more in Indianapolis, too.

I have intimate connections to Roberts School, but they are pale in comparison to Clara Rose Holmes, my third grade teacher. The 60-year-old teacher has been at Roberts for nearly its entire history. She attended Roberts in grades five through eight because her left leg and right arm were weakened by polio. She then attended Shortridge High School and Butler University. She returned to student teach at Roberts and has taught there ever since. Nobody was surprised that she was taking this opportunity to retire. “It just wouldn’t be the same elsewhere,” she recently told a friend.

Miss Holmes was a great influence on me in both positive and negative ways. She recognized my potential as an academically gifted student and allowed me to progress rapidly with two other students. In third grade we were doing long division before the slower kids were finished learning multiplication. She encouraged me to work hard and to feed my curiosity. She instilled in me a love for reading. These gifts have been a source of strength for me over the years.

In recognizing that I had academic potential, she assumed that “busy-work” was a waste of my time and talents. I was exempt from the tedium of some math and spelling drills. I concentrated on more interesting concepts such as compound sentence structure, geometry, logic and science. The end result is that I can turn very clever phrases, understand mathematical abstractions and am a computer programmer of great skill. On the other hand I cannot accurately add a column of numbers or spell worth a damn.

One thing Miss Holmes and others at Roberts taught me is that having a handicap does not hinder one from doing one’s part in contributing to a group. Nor does a handicap exempt one from those responsibilities. We all shared responsibilities in her class. The more able-bodied students pushed wheelchairs. The smarter ones tutored. This emphasis on ability not disability has been an important part of my own dealing with my handicap. She fears that in a regular school such lessons will be lost.

I understand Miss Holmes’ concerns. But I’d rather see the same lessons she taught me presented in a regular school so that handicapped and non-handicapped students can experience together the sense of responsibility toward one another that was a tradition at Roberts.

There was an article about her in the newspaper soon after the reunion. The headline read “I.P.S. closing its haven for handicapped, but teacher won’t forget.” We won’t forget you either, Miss Holmes.

As I entered high school, it became apparent that the program at Roberts was substandard. Mom arranged a deal where I could attend Northwest High School for a half day and take classes on the first floor. The other half of the day I attended Roberts and took whatever classes were upstairs and inaccessible at Northwest. The school system provided transportation on a wheelchair bus in the morning and afternoon, but the midday ride between Roberts and Northwest was provided by Mom. Every day for my last three years of high school, she drove seven miles across town and seven miles back just so l could get a quality education. She did this through a problem pregnancy, a lung disorder and other hardships.

My mom is remembered by some as he lady who thought Roberts wasn’t good enough for her son. The truth was that none of us belonged there.

Beatrice Rogers remembers me well. She was my fifth grade teacher when I got my first motorized wheelchair. She remembers that I’d had it less than an hour when I ran over her foot. Mrs. Rogers was a wonderful teacher who made her classroom interesting by always having projects going on. I had a nice chat with her at the reunion and it brought back memories.

The most important event that fifth grade year was that I got my first motorized wheelchair. The PTA supplied manual wheelchairs for all the kids to use at school and I had one of own for use at home. But in January 1965, Mrs. Vern Hollingsworth donated a motorized wheelchair to the school in memory of her husband who was the chair’s previous owner. I was chosen as a student who could benefit from its use. I never met Mrs. Hollingsorth or knew anything about her except that she had donated the chair and put a small brass plaque on it advertising the fact. Having to answer a hundred times, “Who’s Vern Hollingsworth?” was a small price to pay for the fantastic freedom the chair provided.

The Big Ramp: Getting there wasn’t half the fun.

My most memorable experience of the chair was the first day I drove up and down “The Big Ramp.” Roberts School was designed from the beginning as a school for the handicapped. Why they made it multilevel and two story is a mystery to me. There were small ramps between various ground levels and they were quite tame. My motorized wonder easily climbed them. Going down them I always made sure the way was clear and then I would let it fly downhill. But I didn’t discover that my wheelchair behaved differently on ramps until I tackled The Big Ramp.

Grades six through high school as well as the therapy departments were on the second floor and accessed by either elevator or ramp. One day soon after I got my new chair, I had to go upstairs to practice for a music program with the upper grades. Rather than wait on the elevator with the other fifth graders, I ventured up the big ramp alone.

I was a little scared on the trip up, but the trip down later that day was really terrifying. The first segment isn’t too steep but is longer than the little ramps I was used to. As I started down, everything was OK until I began drifting to the right. I tried turning left but the chair steers by speeding up one motor and slowing the other. My attempts to turn were barely successful and it caused me to go too fast. The length of the ramp let me go faster still. As I approached the level 180-degree left turn I recalled my training-“When in trouble, let go.” I let go of the joystick and kept going anyway! I crashed into the curved brick wall and slid half way around it. My right footrest was bent inward and my foot was twisted but not hurt.

With my reputation at stake, I had to go on. Carefully, I drove around the curved landing and stared down the most terrifying hall in the building. The longest, steepest section of ramp lay before me and I didn’t yet know what had gone wrong on the last section. Unlike the sturdy brick wall I’d just hit, below me was a banked curve protected by a railing that looked much weaker than when I’d seen it before.

Aiming as carefully as I could, I started down — going much too fast for safety. Again I drifted to the right. My attempts to correct the drifting were in vain, and 15 feet from the curve I glanced off the right side wall and let go of the controls again. The slide along the rail slowed me somewhat, but I still hit the balcony railing. I was thrown against my safety belt and slumped forward over it. The rail held strong and my other footrest bent to absorb the impact. I yelled for help and someone ran up the ramp to rescue me.

I later learned that you can coast down the ramp without applying any power and still go quite fast. To stop, you don’t let go. You pull back on the joystick and apply reverse power. By the time I reached sixth grade I was Hell on wheels. I’d take most sections of the ramp under full power. To turn, I’d lock one wheel in full reverse while giving full forward power to the other wheel. The narrow hard rubber tires would slide on the smooth floor and I’d whip around the turns in a four-wheel drift like a sprint car on a dirt track.

But that was years ago and I’ve just settled into my third motorized wheelchair. My last trip down the big ramp was 13 years ago on the last day of school. Part of my nostalgic return to Roberts had to include one more trip up and down The Big Ramp. My video camera recorded the trips but there was no way to recreate the speed or the sliding turns.

Thirteen more years of muscular dystrophy have taken their toll on me. I barely have the strength in my right arm to push the control joystick while riding on smooth level ground. Sharp turns even on level ground are difficult. Gone are the split second timing and delicate dexterity that are required to navigate the wheelchair equivalent of Pike’s Peak.

Of all the teachers I hoped to see that day, Ron Kohl was at the top of my list. I wasn’t disappointed. Mr. Kohl really enjoyed the challenge of an intelligent, lazy student like me. The reason I’d hoped to see him was to confess how I’d cheated on an I.Q. test. One summer, Mr. Kohl called and said that as a class assignment for a master’s degree course, he had to give a student an I.Q. test and analyze the results. I agreed to be his subject.

He came to my house for two days and gave me a battery of standard achievement tests. During the tests we sat in the same room across a desk from each other and he never left the room. Yet, by my superior intelligence and dumb luck, I discovered a flaw in the test design and cheated right before his eyes. Somehow I got the nerve to tell him after all these years.

As in most tests, you were required to fill in the multiple choice answers with a No. 2 pencil. The entire first half of the test I took legitimately. For part two you flip the page over and mark the other side. The lazy designer used the same key for the front and back. As you looked through the paper, the black marks lined up! Furthermore, you flipped the page top to bottom. The easy questions at the top of side one are opposite the difficult questions on side two. That means that the harder the question on side two is, the more reliable your information from the other side becomes.

Most multiple choice questions have five choices. Two of them are obviously wrong, one is probably wrong and the thing that separates the men from the boys is discerning between the last two. Whenever one of them matched a mark from the other side, I picked it. The test went faster, I answered more questions and was less likely to be hurt by guessing.

“I’ve rationalized it all,” I told him, “by saying that if you’re smart enough to cheat and get away with it, then you deserve the extra points.”

He laughed and agreed, adding that it was no wonder he had such a rough time analyzing it. He then said I only ended up with a 115-120 I.Q. I always figured I had 110-115 anyway.

Later that afternoon while touring the rooms upstairs, I ran into Ron Kohl in his former classroom. There was a photo album belonging to Miss Holmes on display. Together, Mr. Kohl and I looked through the old photos and exchanged stories about my former classmates.

One special memory came to mind when he stumbled across photos of Leslie and Nancy Gilson. They were the only other students with motorized wheelchairs and Nancy gave me driving tips after my bad trip down the ramp. Nancy was two years ahead of me and her sister, Leslie, was perhaps three to four years older. They both were very bright and extremely frail from the effects of neuromuscular disease. I would race down the halls clutching my joystick like a Hearst four-speed, but these innocent little girls would daintily grasp their joysticks and could outrun me any day.

Their disease was far worse than mine. Leslie died in her senior year but was awarded a diploma anyway. I asked Mr. Kohl if Nancy was gone yet. “Yes,” he answered, “she died several years ago.”

“I doubted she was around,” I said, knowing that virtually all my friends with MD are dead by now.

He then related the story of the day Leslie died. Nancy was in school and knew her sister was in poor shape. Word spread among the staff that Leslie had died and the family asked that Nancy not be told until she arrived home that afternoon. When they told her that Leslie had died, she very calmly began giving orders, “She wants to be buried in her blue dress, the bearers should be these people, the eulogy should be by … etc.” The sisters had prepared for this day for a long time. Late at night in bed they would talk and make plans for the day when there would be only one Gilson sister.

I miss Nancy. She was a dedicated student and I looked up to her. I’m sorry she’s gone. But I’m happy she is reunited with Leslie in a place where all curbs have ramps, all ramps are shallow and motorized wheelchairs all run the same speed.

My eighth grade class photo. Top row L-R: unknown, unknown, Estell Troxel, Greg Whitney, Teddy Hayes, unknown.
Front row L-R: Rose Shewman, Chris Young, unknown, Richard Gabeau(sp?), Gene Storms, Calvin Brandon, Miguel Rodriguez.

When Rose’s husband answered the phone, I suppressed my disappointment and asked to talk to her. She told me she met her husband two years ago, which was about the last I’d talked to her. They were married the following November.

She said they were planning to attend the reunion and I’d see her then. Although we had talked several times over the years, I’d not seen her since graduation day. I know that Friedereich’s ataxia is a degenerative neurological disease and I could tell that her speech was beginning to slur. I didn’t know what other effects 13 years of the disease might have had.

Rose was not only any first true love in junior high, she was my first true friend in high school. At 17, she had a tall thin Figure, great legs, sandy blond hair and blue eyes. Rose’s most distinctive feature has always been her very angular sculptured face with high cheekbones and a broad smile that creates wonderful dimples.

As I toured the school auditorium talking to friends, someone said, “Rose is over there.” I turned around to see her a few feet away talking to a teacher. Her husband was standing behind her leaning on her wheelchair. I approached, aimed my video camera carefully and turned it on.

She looked great to me. Her figure is the same and she had her hair cut slightly shorter than it usually had been. She was wearing large, designer glasses rather than her ’70s wire rims. The main change was the wonderful air of maturity she had acquired. This was not the cute 17 year old I’d said goodbye to 13 years ago. This was a distinguished, mature, 30-year-old woman who still had the same broad smile and blue eyes.

Although she was somewhat shakier than before, I’d prepared myself for the effects of her handicap to be much worse than they were.

With my video camera running I waited a few seconds until she finished her conversation, and then I said, “Hi Rose.”

She turned and looked right at me and smiled, then introduced me to her husband. “This is Chris, he’s the guy who called last week.” I said some complimentary things to him about his great catch and congratulated them. I told her she was looking good and I was happy to see her. We chatted about various teachers we’d run into. I noticed she had a photo album, so I asked about it. It contained her wedding pictures. I suffered through looking at those, but I already knew what she looked like in a wedding dress. I’d seen it in my dreams for at least 10 years.

I’m glad I saw Rosie again. I’m happy that she is happy, and I am not jealous that her husband married her. I had 13 years when I could have chased her and didn’t. I’m jealous that she now has someone with whom she can share her joy and sadness, her highs and lows her pleasure and her pain.

I had myself a good, hard cry all the way home.

They called it a high school but it wasn’t.

It was 30 students, two teachers, two classrooms, 12 periods a day each 30 minutes long, no labs, no equipment, little opportunity to grow socially from ages 14-18. It wasn’t a high school. If you took the maximum five subjects and had lunch one period, that filled six of your 12 periods. The other three hours a day were “study hall.” Most of the time we tried to study in the same room while other classes met. There was a balcony porch near the high school rooms and we eventually got permission to study outside when the weather permitted. On rainy days we’d sit in the doorway and watch it rain and wonder why we ever gave a damn about anything. We’d talk about opportunities closed to us, sexual experiences we’d dreamed of and uncertain plans for our future. Depression ran rampant through us and we’d ask ourselves and each other, “Why try?”

I toured the high school rooms that day at the reunion and they were almost empty. One looked like it was used as a storeroom and mimeograph room. I tried the doors to the porch. It was locked but I could see that the tables were gone. Appropriately enough, it was raining.

I pressed close to the window and ran my camera to record that view. I need to remember always the depression of those days. I need to remember them vividly, so I’ll never be tempted to withdraw back into that state.

In addition to the two full-time high school teachers, we shared two part-time teachers with the junior high for shop, home economics and music. Betty Atkins was one of them. I saw her at the reunion and smiled broadly at her saying how good it was to see her. She smiled back and was happy to see me too. We didn’t really talk much but those exchanged smiles were important. We both remember a time when I wouldn’t smile at gunpoint.

I recall one day she called me aside and lectured me for being unfriendly and rude. “When?” I asked.

“Nearly always,” she said. “I pass you in the hall and smile at you or say ‘Hi!’ and you mostly ignore me or just grunt. Smile once in awhile or people will think you’re being rude.”

I explained to her that while I wasn’t trying to be rude or offensive, often I didn’t have anything to smile about.

I’m not sure if that conversation had anything to do with it, but several weeks later they called all 30 of us together in Mrs. Atkins’ room for a “rap session” to talk out our problems. It seemed to do us little good at the time, but I now consider it a turning point for me. During the rap session that day I made a big speech.

[NOTE written in 2018: It occurred to me that a present-day reader might not know what I meant by “rap session” in the early 1970s. It had nothing at all to do with rap music which I suspect had not yet been invented. A rap session was just to sit down and talk and air out your feelings.]

“You hear all these stories about the ‘Super-Cripple’ types who make it in the world and are successful and are supposed to be our role models,” I said. “But I’m not FDR or Stevie Wonder or that girl from ‘The Other Side of the Mountain.’ Where did they get that strength? How did they overcome their handicaps? What do I do to tap into their magic that lets them cope or achieve or be somebody?”

Nobody could tell me.

And I then realized that nothing magic was going to happen. The way to do it was to just do it. Just be. There’s no magic. Perhaps it was indirectly, but Betty Atkins helped me realize all of that. You either do something in your life, or sit and do nothing. I’m a “do something” person.

So that day at the reunion, I smiled at Betty Atkins.

Here’s a litany of people I miss s dearly who weren’t at the reunion. I’ve included my relationship with them and why they weren’t there.

Terry Johnson, best friend, died at 18 of muscular dystrophy and pneumonia.

Calvin Brandon. buddy died at 24 of muscular dystrophy and pneumonia.

Wayman Glass, buddy, died at 24 of muscular dystrophy and pneumonia.

Gene Storms, class nerd, died at 16 of muscular dystrophy and pneumonia.

Mark Heron, neighbor and best friend, died at 25 of muscular dystrophy and pneumonia.

Tim Monasmith, classmate, died at 21 of complications of his handicap.

Dan Moran, classmate with whom I argued a lot but never had the chance to apologize, died at 17 of complications of his handicap.

Carl Nash, buddy who I’ve seen several times over the years, who always greets me by saying disgustedly, “Aren’t you dead yet? I thought all you dystrophy assholes were dead by now. Hurry up and conform!” That’s Nash’s way of saying, “I’m glad that at age 31 you’ve beaten the odds.” Nash is living in southern Indiana with his wife, Mary, also a Roberts alum.

James Allen Whitney, a. k.a. “JAW,” class clown, alive and still clowning somewhere.

Estel Troxel, best friend, moved to Kentucky at age 16. I haven’t heard from him since.

Cheryl Abney, girlfriend in kindergarten, married and employed as a secretary despite the fact that she was born with no arms.

Lilly Ottinger, girlfriend in fourth and fifth grade, transferred to regular school and whereabouts unknown.

Cheryl Fayette, my date at the senior prom, married and living somewhere.

Mr. Batt, shop teacher who didn’t send us to the principal the day we stole Cheryl Fayette’s purse and hung it out the boy’s restroom window and dared Cheryl to come in and get it, his whereabouts unknown.

Mrs. Ashabrener, principal (a.k.a. Mrs. Trash Burner), died of cancer.

John Sementa, janitor who told us jokes all the time, whereabouts unknown.

When Roberts School opened it was a pioneer. A pioneer named Salk robbed Roberts of its primary source of students. Many people, including my mother, who have worked hard for mainstreaming of handicapped kids, were pioneers. My heroes in junior high were pioneers like Neil Armstrong. The teams at my part-time high school Northwest are known as “The Space Pioneers.: I was the first wheelchair-bound student to attend that school and that was a type of pioneering itself. Some of the consulting I’ve done has been to apply computer technology to help handicapped people. I see pioneering in other aspects of my work too.

But that’s history. Roberts School became an anachronism in a modern world of mainstreamed special education. Salk has become disillusioned with the institute that bears his name and has left to work on an autobiography. The advocacy groups that fought for mainstreaming are dying out. Northwest High School was recently one of several considered for possible conversion to junior high by the school board. Although spectacular progress has been made to mainstream severely retarded students at Northwest, no efforts have been made to make the school accessible so other physically handicapped students can follow me there.

I have no control over those who are swallowed up by progress-with one exception. I control myself.

Have I become stagnant and lost my “pioneer spirit” while friends got married and raised children? Roberts School failed to stay at the forefront of special education. Have I likewise rested on my early accomplishments?

My business survives but it doesn’t really prosper. I’ve reestablished my relationship with God and the Church but it’s now an ongoing gradual spiritual growth rather than the spectacular leaps of faith and understanding of times past. I’m pleased with the work I do, but it is sometimes tedious and lackluster. I’ve not totally given up on the idea of sharing my life with someone, but my prospects are poor.

Given all of the above, I think I’m keeping up OK. I’m not being left behind in the waves of progress.

But I’m no longer a pioneer . . . and I miss it.

After careful reflection on my life since the reunion last year. I’ve decided to do the following . ..

1) I’m going to continue to focus my computer programming skills in creative ways, especially applications of computers for handicapped users.

2) I’ll continue to keep options open in my relationships with women and not presume that parts of my life are closed.

3) I’m taking seriously the words of my friends who have read my journals and reflections such as this. I’m going to believe them when they say I’ve made them laugh, cry, think, feel and remember. A few years ago, a special friend told me I should write an autobiography. She has offered to advise me on getting it published and to correct my spelling. Others have encouraged me and made similar offers.

I can’t say “no” anymore. I’m going to explore and expand my experiences like the pioneer I once was..

“The Reunion” © Copyright 1987 Chris Young; 3119 Cossell Drive;Indpls. IN 46224

“The Reunion” Video

The day of the reunion I shot some VHS videotape. I watched it a few times but some of the memories were too painful. However recently I downloaded the video to my PC, edited it, added comments and voiceovers as well as open captions. Here it is on YouTube.