by Brad Cohen
I apologized several times for interrupting the class, but she sent me to the principal’s office anyway. Because I was banished in the middle of things and didn’t witness the rest of the events, I’ll let my friend Eric Ludwig finish the story.
“I remember this incident very well,” Eric recalled, “because it was really an eye-opener for me to see the way some people treated Brad, and this substitute was particularly rude and insensitive. I knew Brad had to deal with some crazy things, but I never thought it would come from a member of the faculty. After Brad left, some of the other class members and I really gave it to the sub, really brought her to tears. We were livid. I felt bad about going off on the sub, but then I thought of how Brad must have felt and how he has to deal with this kind of treatment regularly.”
The fiasco with the substitute teacher was just one illustration of why I still did not like to go out in public—I didn’t know how strangers would react. Not that I was housebound or anything, but I did not go often to places you might go regularly—places such as the grocery store, the mall, the movie theater, or the library. TS didn’t totally stop me from going to public places, but the difficult part of being in public was the unpredictability—not knowing what might happen or how people might treat me. Tourette syndrome continued to get in my way. It got me kicked out of restaurants and movies. During these times my friends, like Eric, stuck up for me, which made me feel really good. After years of no peer support, I was especially grateful for it now.
One Friday night some friends and I went to a local restaurant called Tippins for some pie. As we tried to order, the manager told me I had to stop making noises or I would be asked to leave, so I gave him my standard spiel about Tourette’s: “Hi. I’m Brad, and the noises and tics I am making are because I have Tourette syndrome. Tourette syndrome is a neurological disorder that causes me to make noises and tics I can’t control. I’m really open and honest about Tourette syndrome, so if you have any questions, please feel free to ask. Thank you.”
After hearing my explanation, he seemed to understand and he left. But not for long. A few minutes later he very loudly told us we would need to move into a corner because I was disturbing people. It was a very awkward moment. It wasn’t so much what the manager asked us to do; it was the way he asked. He was very defensive and loud and turned the situation into a public scene.
Usually when I go out in public and someone asks about Tourette’s, I’ll gladly educate him or her. Then, if the person still doesn’t understand, my friends jump in. I’ve never talked with my friends about jumping in—it’s just something they do spontaneously, and usually with far more passion than I. You see, I am used to these situations. They are not. So when something like this happens, my friends get frustrated and defend me.
You might wonder how I feel during all this. Well, I am embarrassed for myself and for whomever I am with. I revert back to the kid I was in junior high, and I become afraid that my friends won’t want to do things with me anymore. I know I am not doing anything wrong, yet I am being punished. It is a terrible and depressing feeling, to say the least. Invariably, the person kicking me out of wherever we are becomes increasingly arrogant. My chance of educating the individual about Tourette’s, and thus finding a positive outcome to the problem, decreases as his or her level of arrogance increases. I fully understand that my noises can be distracting to others, and I am willing to compensate by doing whatever I can to help out. All I ask is that I be treated with the same courtesy and respect that the person who is distracted is receiving.
In this case, in addition to being kicked out, we were publicly humiliated. We tried to enjoy the rest of the evening, but the damage had been done; our evening had been spoiled. Now all we could talk about was “the situation.” I didn’t mind, but I figured we could have been talking about other, more enjoyable things if only the manager had been more pleasant. But it didn’t happen that way. I was very upset, mostly because the whole scene need not have happened.
Talk about timing—the next morning our newspaper printed an article about another guy in the area who had Tourette’s. I decided to take action. I called Tippins headquarters in Kansas City and I sent them the article. The company executives were so apologetic that they ended up sending me a gift certificate for my friends and me to have a complimentary meal. I was pleased that they did the right thing. One of their employees messed up, but they did what they could to make amends. The best thing of all? There was no dollar amount on the certificate. We could order as much as we wanted.
The first chance we got, I rounded up my friends and we ordered a feast. I, personally, made sure I had two pieces of pie. Sometimes there are advantages to having Tourette’s.
“We ran up a huge bill that night,” recalled David Amsterdam, one of my friends who was with me on both occasions. “But on the first night we had gotten a bunch of dirty looks from the manager and the other customers, and we were treated badly. We all felt they owed us, and the second time we made sure we had a lot of fun.”
The other good news was that all around me I was raising consciousness of TS, and things continued to improve with my family. No, we hadn’t turned into the family on Leave It to Beaver or anything, but I could see definite progress. Once in a while, as a family, we could even share a laugh.
One night I was having dinner at my aunt Laurie and uncle Stu’s. I was really ticcing that day, going hard and heavy every few seconds with “Ja, JA … JA” and “Woop, woop.” My cousin Mandy was six or seven then, and as soon as I made a noise she would imitate me. Then their dog, Pepper, would bark. So there we all were at the dinner table.
“Woop, woop.”
“Woop, woop.”
“Aarf.”
“Woop, woop.”
“Woop, woop.”
“Aarf.”
Laurie later recalled, “Stu and I were mortified that Mandy was imitating Brad. But then we all looked at each other and burst out laughing—Brad included—because it was so funny with Pepper barking.”
The incident became a learning session for Mandy as Laurie and Stu later explained to her that I couldn’t keep from making the noises, and she got her first real lesson on Tourette’s. A few years later when Mandy was making her Bat Mitzvah, she gave a donation to the Tourette Syndrome Association as her charitable gift. I was incredibly touched by her gesture because much more than the monetary gift, it validated Tourette’s, and me, in that part of our family.
Those were the good times. But sometimes everything was so grim that all I could do was cry. One of the lowest moments in my life came when I got my first job as a busboy at a popular restaurant. By this time I had turned sixteen and had recently gotten my driver’s license, a momentous occasion in the life of most teens, but especially in mine. My parents never put pressure on me to get a job, but it was something I really wanted. Ever since I was little, I had loved taking on responsibilities and helping out others. I would mow lawns, shovel snow, or baby-sit. I didn’t do it for money; I just liked helping out. But now that I had a driver’s license I thought about doing something that would actually pay.
One afternoon my friend Al and I applied at Marciano’s Restaurant. The manager interviewed us, and to our great delight we were immediately hired as busboys. We each quickly found some black pants and a white shirt—our uniform—and we reported later that day for work.
I can’t tell you how happy I was to have this job. I was going to be clearing tables. I was so excited. It sounds strange to be so thrilled about such a menial job, but being in the workforce was something I had been looking forward to for a long time.
Then, standing there in uniform, even before I started my job, I was fired. Even though I had told the manager when he was interviewing me that I had Tourette syndrome and he hired me anyway, I was fired. He said that on further thought he had decided that I would disturb the customers.
I was devastated, and Al was as upset as I was. He offered to quit, but I encouraged him to stay. There
was no point in both of us being jobless. I went out to my car and got in, and the tears began to flow. I was so disappointed and hurt and angry. I wondered if Tourette’s would keep me from ever having a job—if I would ever be able to support myself. I wondered if my dream of being the teacher that I never had was just a delusion. I wondered why I had to go through all this, why I had to endure being mocked and beaten up and rejected time after time, day after day. It was one of the few times I have given in and let Tourette’s take over. It was one of the few times I have just plain given up. I cried so hard all the way home it’s a wonder I got there safely.
When I got home I shut myself in my bedroom and cried so hard my mother had to kick the door down to get to me. Now I have to smile at the image of my tall, thin mom breaking down the door. It was the ultimate display of a parent protecting her child. But at the time I couldn’t find any humor in the situation. At that moment, I really needed my mom. I was truly a broken man.
My parents and I sued the restaurant for firing me. This was in the early 1990s, right around the time Congress passed the Americans with Disabilities Act (ADA), a federal civil rights law that prohibits discrimination against people with disabilities in everyday activities, including work-related situations. I found a copy of the law, cut it out, and put it in my wallet. It also said that a public place must make reasonable accommodations for a disabled person. I liked these words, and this law in my pocket would become good ammunition in the future. I would just pull it out and show people that they couldn’t kick me out of a restaurant or a movie. They had to provide me a reasonable accommodation. This tactic has usually worked.
We hired a lawyer, who argued that the restaurant had violated the ADA. The courts ended up being favorable to me and I won a small settlement. That was gratifying, but what I really wanted was a part-time job like a regular teenager. At this time and in this place, however, it was not to be. The experience reinforced a hard but valuable lesson—that there were going to be limitations in my life, limitations made by others that I could not control.
That’s the way it goes when the “thing” wins. Sometimes you can’t take the straight path; you have to find your own way. But my life with Tourette’s has made me realize that everyone has a “thing” that haunts them in some way. It might be prejudice or chronic illness. It might be physical limitations or life circumstances or ego or pride or jealousy or hate, but everyone has their thing. When we can control the thing, we feel empowered and optimistic. But when the thing wins, we travel the road to despair. The key is to find a road that leads around your particular limitation, a road that maybe has more bends in it but gets you to the same point in the end.
Once I realized that, I understood all the more that my road in the workplace was going to be traveled with young kids. Before they are taught differently, kids do not judge. They do not criticize unless they are encouraged to do so by their families and peers. Generally, children are open and curious and loving, and I wanted to be the teacher who encourages those traits. Somehow I knew I’d get there.
Within a few years, I had taken on more responsibility in BBYO and eventually was twice elected president of the St. Louis Council. In that capacity—and other BBYO positions—I traveled across the United States. Each time I got elected to a new office, my name and sometimes my photo would run in the local paper. I eventually had the honor of being one of ten people elected from around the world to the BBYO International Board, a position that held a great deal of accountability and required some international travel. This was huge!
The election to an international position took place in Pennsylvania during my senior year in high school. After the election I flew home and was greeted at the airport by my mom and Jeff … and by my dad! I thought it was a bit odd that Dad was in town, because we still did not see him that often, but as soon as we got to my house, I found out why. All my friends had gathered to celebrate my big victory. In that moment, I realized I wasn’t alone in winning the international position; all my friends, my family, and the St. Louis Council had won, too. They were my team—my support group—and they all played a big part in helping me achieve everything that I had achieved.
Everyone was so excited for me, and I was excited for them. They all wanted to hear the details about the election and my trip and my new responsibilities. Everyone wanted to share the excitement.
“You really had to be there to understand how happy we were for Brad,” said Jeff. “We were in the middle of witnessing this amazing transformation my brother was going through. One reason we were so excited is that we all kept thinking of Brad just a few years before—the overweight, out-of-control kid with no social skills. Now he was on the international board of BBYO. Amazing.”
Steve Mathes agreed. “So many people give BBYO the credit for Brad’s success,” he said, “but I really think it was Brad himself. BBYO helped, certainly, but Brad has an incredible amount of drive and determination. Without his never-say-no attitude, with or without Tourette syndrome, none of this would have happened.”
In my new position I planned conventions, participated in conference calls, traveled the world, and met some very neat people across the globe. I can’t say what the best part of all of it was, but traveling and meeting people from around the world has to be one of the highlights. I met so many people who are still friends of mine to this day. It was just an incredible experience, and pretty good for a kid who a few short years earlier couldn’t even find someone to sit with in the lunchroom. (If I’m repeating myself, it’s a sign of how much my new life really meant to me.)
My first international trip was to Poland. Traveling, for obvious reasons, can be difficult. Often, people stare. In fact, the number of people who turn to look at me in an airport is amazing. It’s a very weird feeling. I feel their eyes on me, and it makes it hard for me to concentrate on anything else, so one of my strategies is to just stare back. It doesn’t exactly lighten up the situation for anybody, but it makes me feel better and hopefully it makes some people realize what they are doing. I know my Tourette’s often makes me the center of attention, but some people seem to think that I’m their own personal freak show.
I can’t avoid flying on airplanes. Like everyone else, I have places to go, and when I fly I always get a mixed bag of reactions—compassion and disgust, confusion and irritation. I sometimes wish I could get up in front of the passengers and make my speech like I did in my classroom at school.
I always try to prepare myself mentally before I get to the plane, and when I step on board I sometimes tell the flight attendants that I have Tourette’s. But sometimes I don’t. It all depends on the situation and how I feel at the time. If I tell the flight staff, I usually pull away from my brother or whomever I am traveling with so they aren’t bothered with my problem. I never want to put the burden of my Tourette’s on people I am flying with. If I am really calm and relaxed, then I might not say anything to the flight staff at all.
If I have a long flight, I do my best to relax. Because I don’t tic when I am asleep, it’s an easier ride for everyone if I sleep part or all of the way.
Most of the time I tell people who are sitting close to me about Tourette’s. Many times they nod and accept it without a problem. But it’s not uncommon for some people to ask the flight attendant if they can move to a new seat. Although they never say it directly, I can tell by their body language that they want to move to get away from me. That used to bother me—a lot—but now I realize that they are just uneducated about Tourette’s and feel uncomfortable, so it’s okay.
I’ve actually learned to enjoy watching how different people talk about me. It’s a real study in human nature. Most try to be polite and talk in a way that they think I won’t notice. But I live with Tourette’s day in and day out. I have excellent peripheral vision and I can read lips. I can sense what is going on and I can tell when people are talking about me by the way they start whispering and the way they casually lean over and look at me. Again, it’s
okay, especially if I’ve told one of them I have Tourette’s. I understand that they are just educating each other, and it makes me feel better if I know someone understands rather than having them look over at me a million times and asking themselves, “What in the world is he doing?” If they are just staring and pointing and being openly rude, I might even go up to them and talk to them about Tourette’s.
In Poland, there were over a hundred of us BBYO teens. We were all representing our respective cities as part of a BBYO Holocaust education program known as the March of the Living. There, upon our after-midnight arrival, I had my first opportunity to speak about Tourette’s on foreign soil.
“Our group was gathered at the Forum Hotel in Warsaw,” recalled Jeremy Poock, a friend I met on the trip. “We were all so tired, as we had traveled from New York, and our advisors were giving us instructions for the next day. Through it all, I kept hearing these strange noises, although I couldn’t tell who or where the noises were coming from. Then Brad was introduced. Standing in front of complete strangers, Brad explained that he had Tourette syndrome and that the noises we heard were caused by his condition. My reaction was pure admiration. I admired Brad for his courage to speak up in front of us all. And I admired him because I knew even then that Brad would never let Tourette’s get in the way of pursuing any endeavor he wished to pursue.”
From the moment I gave my speech, I had no trouble on that trip, or any other that BBYO sponsored. I also noticed that although there was somewhat of a language barrier wherever I traveled, once I explained what Tourette’s was all about, most people in other countries were more accepting of it than people here in the United States. I know I gained more friends and life experience during my stint in BBYO than in any other endeavor I have been a part of.