by Brad Cohen
A few years earlier, my mom had remarried--to a great guy named Stanley Goldstein. Jeff and I were both grown up at this point, so we didn’t give Stanley any of the problems we had given Diane when she married our dad. We were genuinely happy for Mom. She had put off all thoughts of a personal life for so many years because Jeff and I were both so out of control as kids--she was long overdue for some personal happiness. Sadly, just a year after Mom and Stanley married, he was diagnosed with pancreatic cancer. A year and a half after the wedding, Stanley died. We all had grown to love Stanley, and his death was a personal loss for each of us.
Since that time I had been thinking about the fact that life can be very fleeting. We never know what set of circumstances will bring our loved ones and us closer together, or what will drive us apart. Even though my dad and I have our differences, he is the only dad I have and I love him, so I upped my efforts to improve our relationship.
I was a little surprised when my dad agreed that our rapport needed some work. For some reason I hadn’t expected that from him, but I welcomed his attitude. A few minutes into the conversation he told me that the biggest problem he had had when Jeff and I were kids was that he felt helpless. “I was so frustrated about your situation and the fact that I could not do anything about it,” he said to me. “There were times when I just went home and cried, and I prayed for a way to make things better. But I would never let myself show these emotions. I wanted to be the strong father figure.”
I wish now that he had shown some emotion, as that might have let me see a different side of him. I sometimes want to put my dad in my shoes for one day as an experiment and see what he thinks. I think he would better understand what I go through. I know he tries, but I think that unless people have Tourette’s, it is virtually impossible for them to really know what it is like.
Later in our conversation Dad also agreed that he was, and is, hesitant to go out in public with me, but not for the reason I thought. It is not because—as I had thought when I was a kid—he is embarrassed by me. “I get mad at the other people in the room who stare and who make rude comments,” my dad told me. “At times, I can even get confrontational, because it hurts me when others are rude to you.”
I am really glad to say that Dad and I have taken some giant steps forward in the last few years. It doesn’t matter how old a son is; he always wants his father’s approval. I think I have finally achieved some of that with my dad, as witnessed by this portion of an e-mail he sent to me:
You have turned out to be one incredible young man. I am not sure if it is because of the Tourette’s or in spite of the Tourette’s, but you never do anything but amaze me with your attitude of life and love. To be honest, I am not sure if I could have gotten to where you are if I had Tourette’s.
I completely understand my dad’s frustration with the way people sometimes treat me in public, because I still get kicked out of places where people congregate. It’s especially embarrassing when work colleagues or friends are with me.
One day, I went to lunch at Buffalo’s Café in Kennesaw, Georgia, with two colleagues from school, Susan Scott and Sandra Keeble. We hadn’t been there very long before the manager came over to inform us that we would have to leave if I continued making noises. I tried to inform him that I had Tourette syndrome, but he did not listen. I pulled out an information sheet on Tourette’s but he would not look at it, so I read it to him. He still insisted that since I was disrupting the other customers, I would have to leave. I tried once more to inform him that it was against the law to kick people out because of a disability and that I was covered by the ADA, but he threatened to call the police if we did not leave. The irony is that the police probably would have been more helpful to me than to him. Because I was with two colleagues, I decided that continuing to protest wasn’t worth it, and we left to eat lunch elsewhere.
One BBYO friend I hooked up with after I had moved to Atlanta was Mara Peskin. She and another friend, Adam Max, and I were at a Braves game (this was prior to my working on the character staff) when the people in front of us began heckling me. Things escalated and the men in front of us asked a stadium official to move us because they said I was disturbing them. But after I explained Tourette’s to the stadium employee, it was the people in front of us who were moved. Needless to say, they were not happy about it and continued their loud verbal abuse of me until they were out of range.
“After the episode,” said Mara, “another person sitting near us came over and told Brad how impressed he was with how Brad had handled things and how sad it was that there were people in the world like that group. I agreed with him. I was very upset over the ignorance these people showed, and their unwillingness to listen to Brad. I think this was the first time that I realized what Brad has experienced his whole life—the stares, comments, ridicule, and constant explaining.”
I told Mara not to worry and that I was actually encouraged by the situation. It showed me that for every ignorant person in the world, there are also many understanding and compassionate ones. There is hope after all.
It never gets any easier to be thrown out of a place, though. I am always embarrassed, frustrated, and hurt emotionally. Often I am mad, and doubly embarrassed, if my friends are around, even though I know they support me unconditionally. That’s a feeling that never seems to pass, either. By now I’m used to the looks, the stares, and being kicked out, but my friends are not. I don’t want them to experience what I’ve had to experience. As a matter of fact, no one should have to.
But every time I am ejected from a public place, something else happens to show me the beauty of the human spirit. So I do my best to educate everyone I come across in the hope that the next person they encounter with Tourette’s will be treated with more courtesy than I was.
In addition to the kinds of places I’ve mentioned, there are numerous other places where Tourette’s is really an issue—think musical performances and lectures, for instance. One place where silence is most golden is the inside of a movie theater. As I’ve mentioned, I rarely went to movies when I was a kid, and seldom do now. It is just easier to wait for movies to come out on video.
When I was still in high school—and shortly after I had constructed my ADA card—my friend Al Snyder, three other friends from high school, and I went to see the movie Harlem Nights. I smelled potential trouble when we got there and the theater was packed, but I felt secure with my new card that explained the rights of people with disabilities. Actually, we were on a mission that night to prove that I could and should be allowed to stay in the theater. In a way, this was my own personal Civil Rights march. We strongly suspected that I would be asked to leave the theater, and this was the first time any of my friends had offered to stand up for me publicly. I was really proud of them, and proud that they thought enough of me to take this stand. It hadn’t been all that long ago that I didn’t have anyone to call friend. So the five of us walked into that theater full of defiance and idealism.
Al remembered, “As the movie began and Brad’s noises began to reverberate through the quiet theater, I recall feeling self-righteous about any pending confrontation. Of course I would stand up to any movie patron who told Brad to shut up. Of course I would fight anyone who had a problem with Brad and wanted to take the action outside. Of course I would stand up to any usher or manager who asked us to leave. After all, we had the card telling the world that they were not allowed to discriminate against Brad.”
A few moments into the film, though, my friends and I faced a dilemma. This really was a no-win situation.
“I wanted to tell the world about Brad’s Tourette’s,” Al recalled, “and explain that he can’t help it and that it is unfair to be discriminated against. But I also was realizing how disruptive Brad’s noises really were to a movie patron who had paid good money to see a movie. I thought how badly I would feel if someone else made noises throughout the movie, disrupting my viewing enjoyment.”
As could be predicted, members of the
audience repeatedly shushed me. Several people warned me that I was going to be reported to the manager. A man in front of us even turned around and threatened to shut me up himself. All the while I had said nothing—and my friends had said nothing. I felt like Rosa Parks refusing to give up her seat on an Alabama bus. Then Al jumped in and tried to explain about Tourette’s to the man, but, inevitably, the manager was called and all five of us were asked to leave the theater.
I pulled out my ADA card, and my friends and I tried to explain Tourette’s to the manager. I had convinced my friends that this card was my ultimate defense, that just showing it would make things all right. My friends defended me the best way they knew how, but our great stand against tyranny ultimately failed. Our attempt to rise up against our oppressors had been completely unsuccessful. The magic ADA card had not done any good, the public was still unwilling or unable to accept Tourette’s, and I had still been kicked out of the theater.
“The five of us had set out to make a difference that night,” Al stated. “We tried to fight, but our tactic was too drastic. We couldn’t make everyone in the theater understand. Unfortunately, to this day I have never attended a movie in a crowded public movie theater with my good friend Brad Cohen.”
During my fifth year of teaching, I turned twenty-seven. No one said anything to me about a celebration, so I accepted that my friends were busy, and besides, turning twenty-seven wasn’t a really big deal. On my own I cheerfully planned a small, quiet celebration at my favorite Mexican restaurant, a little hole-in-the-wall place called Taxco. I loved their cheap and plentiful food.
My birthday is in December and that year on a Monday, but the weekend before was highly unusual—I had no plans for Friday or Saturday night, and no plans for all day Saturday either. That just was not normal for me. Usually I had the luxury of picking and choosing among a lot of options what I wanted to do, but this weekend no one had mentioned anything and I didn’t have a clue what my friends were doing. I was, however, asked to keep Sunday morning open by my friend Brian Lapidus. Brian said I should wear my St. Louis Rams jersey, because some NFL players would be signing autographs at a local shopping center that morning. He said Jeff Lapp, my roommate, would drive me, and Brian would meet us there. He had also given me a Rams media guide and said we were going to meet someone that he knew I’d love to meet. Since Brian knows what a sports fan I am, I eagerly anticipated meeting one of the Rams football players.
Jeff made himself pretty scarce over the weekend, and by Saturday afternoon I was bouncing off the walls. I called some friends, who said they were going out for dinner and if I had no plans I was welcome to join them. At dinner, everything seemed normal. After dinner, I asked if anyone wanted to stay out on the town. No one did—it seemed everyone had to get home early. I really wanted to go out—my weekend of solitude was grating on me. But, like everyone else, I went home and went to bed early.
That night some bad weather moved in and the roads got icy. I was disappointed, afraid that our Sunday morning event would be cancelled. But my fears were groundless. Brian had said to meet him there early, so by nine I was ready, dressed in my Rams regalia, media guide in hand.
Jeff drove. As we got closer to the Regal Cinema—where the sports stars were supposed to be-—I noticed that there were no cars around. I thought we were too early, but then I saw someone around back sitting in a car. Little question marks began batting around in my brain.
By the time Jeff and I got out of the car, I knew for sure that something was up. I asked if I really needed the media guide, and Jeff smiled and said no. As we entered the theater and walked straight through without buying tickets, I thought that maybe Brian and Jeff were taking me to a movie. Though I rarely went to the movies, I would sometimes go early in the morning when it wouldn’t be crowded.
As we walked down the theater hall, Jeff commented, “The guy we are here to meet is in theater nine.”
So I thought maybe we really were here to get an autograph. But where were all the other people? Surely if sports stars were giving autographs, people would be lined up and spilling out the door. Wouldn’t they? At the very last second, as Jeff opened the door to the theater, I thought, “Ohmigosh, I bet there will be people in here I know.”
And sure enough, the instant I walked around the corner about forty people jumped up and yelled, “Surprise!”
Words cannot express my true astonishment. Usually I am a pretty perceptive guy, but this time they had gotten me good. All of them. I could never have been more surprised than I was. My father and stepmother were there, and so were all my friends.
I thought back to all the excuses my friends had made the night before as to why they couldn’t stay out late. I thought about how people had not called me to set up weekend plans. I wondered how they could possibly have planned something big behind my back, and how they knew whom to invite-—because all my closest friends were there.
My friends had arranged a private screening of How the Grinch Stole Christmas for my birthday, so I could enjoy the movie without fear of getting thrown out. They actually bought out the theater for my party. It was one of the most thoughtful things that had ever been done for me, and I will remember it as long as I live. For the first time since I developed Tourette syndrome I was able to watch a real movie in a real movie theater without any pressure of thinking I might be thrown out. I was so excited that I made a lot more noises than usual. But I didn’t care, and neither did my friends. In fact, as the movie continued, it was hard for me to stay focused on the story line because I was so wound up and so overwhelmed by the thought and love and planning that had gone into it all.
Later, I learned how it had been accomplished. My roommate had rummaged around and found my e-mail list. Then several friends had gone through it and invited everyone they thought I would want to be there. And they were right on—they made excellent choices. That was my best birthday party ever!
COLORING OUTSIDE THE LINES
EARLY IN THE FALL OF 1998, just into my third year of teaching and just over two years after I had graduated, I was invited back to Bradley University to receive its Outstanding Young Alumnus Award. It was quite an honor for me, especially as Celia Johnson, my advisor at Bradley, would introduce me.
This was one of several recognitions I received in the late 1990s, early 2000s. Laura Weiss, a friend of mine from Atlanta, kindly nominated me for the Ben Jerry’s Citizen Cool Award, and I reached its semifinals for my involvement in community service. One of my students, Lindsay Hopkins, nominated me for the Atlanta Braves/BellSouth Excellence in Education Award. I was very touched by this award, and by Lindsay’s letter, which she wrote as an older student:
My second grade teacher Mr. Cohen is my hero because he taught us that if you try hard enough, you can do anything. I’ll bet you have heard a lot about disabilities like being deaf or blind, but Mr. Cohen has Tourette syndrome, which makes him make faces and make loud noises.
Some people stare at him when he makes his noises, but it is not his fault. I remember when we went on field trips. Some people would laugh and stare at him, but he didn’t let that bother him. Even at school assemblies, kids who don’t know him well will tell him to be quiet. We felt bad, but Mr. Cohen never seemed to mind.
Mr. Cohen is a great teacher and everyone wants to be in his class because he is so cool. Sometimes he wears a tuxedo to school and sometimes he wears big, huge, silly hats. His class is always fun. Mr. Cohen is a huge sports fan. His favorite team is the Atlanta Braves. He likes them so much, he is one of the mascots at the Braves games.
I’m glad I got to be in Mr. Cohen’s class. He taught us a lot but the main thing he taught us is to try our best and to be proud of ourselves. I’m proud of Mr. Cohen for not letting Tourette syndrome keep him from doing what he wants to do. Mr. Cohen is my hero.
Lindsay Hopkins
My real reward, of course, is to see each of my students progress and succeed. Six years after I started teaching, I received a huge
reward in the form of an invitation to a former student’s Bar Mitzvah. The invitation didn’t come as a surprise; for years the boy’s mother had been telling me to save the date. I felt a special affinity for Jacob Singer because, of all my students, he was the most like I had been as a youngster. He had a really hard time concentrating, and while he was a student in my class I had to send many notes home to his parents about his problem of constantly cutting up in class.
Even so, no matter how much Jacob acted up, I never regretted having him in my class. Jacob was silly. He was impulsive. He couldn’t resist blurting out the answer without raising his hand, even though schoolwork in general didn’t come naturally to him. I spent a lot of time with Jacob, one-on-one, encouraging him not to get frustrated with the math and reading that seemed to come so easily to other kids.
Jacob’s mother, Teri Singer, was an involved parent and spent a lot of time at the school. One day she took a picture of Jacob and me standing side by side. When I saw the photo, I recognized what other teachers always said: Jacob and I looked like brothers. We both had brown hair and a look of mischief on our faces.
“Brad never gave up on Jacob when virtually all of his other teachers did,” said Teri. “He has this ability to challenge and encourage each child on his or her own level. Brad saw something in Jacob and just kept chipping away—he would not let Jacob slip through the cracks. I joke that Brad put a life vest around Jacob when the other teachers were going to let Jacob sink, but it’s true.”
I taught Jacob for two years—second and third grade—and got to know his family well. He needed an extra push on almost every assignment, but if he focused, he could do the work. I didn’t mind putting in the extra time with him, and when he left my classroom for fourth grade, I felt good about his chances. He had improved so much during those two years.
