Disabled and Challenged Content

“I have myotonic muscular dystrophy. Perhaps you also have a disability or disease that you must face every day of your life. As a teen I suppose I struggled the most. Then it hit me—My disability isn’t in charge of my life, I am. It was up to me to make my life worthwhile despite all my problems. Here is my story.” Terry speaks frankly and in a language that children and young adults can easily understand.

“I have myotonic muscular dystrophy. Perhaps you also have a disability or disease that you must face every day of your life. As a teen I suppose I struggled the most. Then it hit me—My disability isn’t in charge of my life, I am. It was up to me to make my life worthwhile despite all my problems. Here is my story. I am not an expert, just a young adult who wants a full life. I’m sure you do, too. My greatest wish is that my books offers you the inspiration to do our very best and realize your dreams.”

While Terry Scott is “not an expert, just a young adult who wants a full life” and writes in clear, straightforward language, this book discusses such practical topics as: getting doctors to stop talking over your head and scaring you, making good friends, interviewing and landing a job, having fun, what to do with people who don’t give you a chance or expect next to nothing from you, girlfriends and boyfriends, and planning for the future.

The content of Disabled & Challenged (written at middle school level in large print with photos and illustrations) can be used in discussions with teenagers and young adults, including individuals who are not able to read the book.

From Preface

I have a disease that affects my body and at the same time has caused me to have a learning disability and a speech disability. I guess you could say I have quite a few problems. Later in this book I will tell you more about my medical problems and what I am doing about them. The point I want to make to young people who have a lifelong disability and are struggling to do their best is that you are on a long journey, but you have fellow travelers…

As surely as you cannot erase your problems, you also cannot avoid or ignore them, because that would make it harder for you later in life. You basically have no choice but to find ways to help yourself. Otherwise, your disability is going to catch up to you, and things could get worse…

I have learned that my disability is not in control of me. I am in control of me, and it is up to me to make my life better.

…I hope you find this book to be a rewarding learning experience that is invaluable throughout your life. My greatest wish is that you will realize some of your fondest dreams in your iifetime, and that this book offers you the inspiration to do your very best.

From Chapter 8. Friends, Lovers, Relationships

Another reason people with disabilities face special challenges is because it is harder for others to understand their problems and get past them to get to know the real person inside. We can make people feel uncomfortable without even trying. It is also harder to make friends because other people may not know quite how to act around us, or how to help without making us feel helpless. I have faced all of these situations many times…

Sometimes, being lonely is the worst part of being disabled. Maybe you are afraid to get out of the comfortable surroundings of your house. Being scared of the unknown is tough for anyone. Fortunately, I have not had to face this situation. I have always had someone to socialize with and to have fun with. However, I have been afraid before, and I have cried when I felt scared. I think it is important to talk to someone who understands your feelings—maybe one of your parents or medical buddies, or a teacher. You need to figure out how you can reach out to people in ways that are comfortable for you…

Here are some tips that might help you make and keep new friends…

At last, a wonderful book for very special people whose lives are precious—written by someone just like themselves. This will touch so many young lives. Thank you, Terry!

Anne Alpert, parent of a young adult with special needs and
Connecticut Teacher of the Year

Inspiring and full of terrific ideas. Our teens and young adults will all LOVE this book.

Mayer Stiskin, Director Emeritus, Summitt Schools, NY and
Founder, Summitt Special Needs Camp, PA

The book has garnered lots of press and for good reason. Terry, who was 31 at the time the book was written, suffers from myotonic muscular dystrophy. One of Terry’s goals was to write a book. His father, Barry Cohen, was a well-known psychologist who works with many major national corporations, signed on to help his son make the dream come true.

The book offers advice and encouragement on how to learn to live with a disability. As Terry says, “My disability isn’t in charge of my life. I am.” And he backs that up by dealing with topics like handling doctors, making friends, interviewing for a job, having fun and planning for the future. Yet, what’s really impressive about the book is Terry’s honesty and self-awareness. After reading his story, you realize there’s something for everyone here.

Terry Scott Cohen, who inherited myotonic MD from his mother, dedicates this autobiography to “kids and young adults who are having a hard time dealing with their disabilities.” His father, a psychologist and Terry’s primary caregiver, assisted with the writing.

The book offers helpful advice on solving practical problems about employment, relating to others and dealing with doctors. The authors advice readers to enjoy their lives, find things that make them happy and learn independence.

Terry has a serious physical challenge with a genetic neuromuscular type of dystrophy. It is progressive and a great challenge to him and his family. His story tells of his struggles in life, not only in learning about his condition, but learning how to relate to physicians, therapists, and everyday acquaintances who are not so challenged.

I recommend this book to all physically challenged patients so that they can learn from Terry’s experiences and increase their awareness and understanding of their disability and how to cope with it.

The book is suited to young patients and caregivers who can then realize that being “disabled” is really about being “differently able.” I strongly urge readers to add this fine book to their library and show it to family and friends alike.

Hugo Keim, M.D., Former Professor and Chief of Spinal Surgery
Service, Columbia-Presbyterian Medical Center, New York, NY

…Terry has repeatedly said that doctors can tell you all about your disease, but they cannot tell you how to go through life with it or how to stay the course and reach for one’s dreams. Life challenges are many and varied, and Terry has covered them so well…his book is especially credible for young persons and their families. He has presented life challenges that many of my patients experience almost daily.

We physicians know only too well how important it is to treat the whole person, but how very difficult it is to offer this counsel. We can only do so much, given our busy patient loads and the presenting issues that we hear from our patients.

Terry’s book is an excellent therapeutic resource. It can offer patients a greater sense of value and purpose. It is easy to read and full of practical tips. My patients will identify with the many personal experiences that Terry has faced and will face dealing with a progressive disease. It is a life story and so much more. A disability does not seem quite as overwhelming after one has read this book.

Terry Cohen writes what he knows. He’s not a celebrity, or a famous athlete, actor, or singer. But Terry is a good role model for kids with physical and learning disabilities who are worried about what will happen when they finish school… This book is filled with wisdom that would benefit any young person, disabled or not.

Terry Scott Cohen has myotonic muscular dystrophy (MMD), and has been meeting physical, mental and emotional challenges throughout his young life. He graduated from high school, did restaurant work for a short time, and then enrolled in a program for young adults with disabilities, where he spent six years successfully learning how to live independently. He resides in Clearwater, Florida, where he shares his home with Buddy, his bichon frise.

Barry M. Cohen, Ph.D., completed his graduate training in psychology at Columbia University and his doctorate at the University of Tennessee. A nationally recognized psychologist who counsels leaders in business and industry, and whose clients have included global leaders and individuals at many of the largest U.S. corporations, Dr. Cohen has several published articles to his credit as well as many national awards.