Paul Smith and Kenny Tedford, Jr. on their Book, Four Days with Kenny (who is partly deaf and blind)

In this interview, Paul Smith and Kenny Tedford, Jr. talks to Alexander “The Engineer” Lim, host of AuthorStory by alvinwriter.com, about their book, Four Days with Kenny Tedford: Life Through the Eyes of a Child Trapped in a Partially Blind & Deaf Man's Body.



“Look at the mirror. You are the greatest hero you could ever meet. You are. Not those around you.” ~Paul Smith and Kenny Tedford, Jr.

(Explanatory Note: Kenny Tedford, Jr., while in utero, experienced oxygen deprivation, which has resulted in him being deaf in both ears, legally blind in one eye and being cognitively impaired. The reason that Paul repeated questions to Kenny throughout the interview was because Kenny was more familiar with reading Paul’s lips than those of the interviewer’s.)

Kenny Tedford (left) with Paul Smith (right).

Kenny’s parents had nine children, and Kenny was the only one with issues, as he was born two months premature, as he was taken out once his doctors realized that the umbilical cord was wrapped around his neck. His parents died when he was eight, when he then lived with his uncle and aunt. Just about everyone around him - his uncle, his teachers, the school principal, his childhood psychiatrist - said that he wouldn’t amount to anything. As he was deaf, it was easy for other kids to jump him, and he became the target of bullies due to his conditions. As a teenager, Kenny wrestled, did gymnastics and played football. He learned sign language only at the age of 21, and he remarks that who he is now is essentially his “inner child,” as being a grown up man “doesn’t seem to work.”

Kenny mentioned a story of being called “retarded” when he was in high school, and he didn’t know what the word meant. Two of his friends took exception to that and held down the boy who called Kenny retarded so Kenny could beat him up. Kenny was somewhat puzzled by that, as the boy had insulted him, rather than his two friends, and Kenny figured that, if he was insulted, he should be the one to act on his own. “If I don’t understand what you say or do to me, why should I get mad, ‘cause I don’t know what you’re doing,” Kenny sums up.

Kenny related that one of the incidents that got him started on the road to becoming a storyteller took place in second grade, when he and his classmates were given crayons and told to draw something. Kenny was only given two or three colors of crayons, while his classmates were given twenty-four colored crayons. Kenny’s pictures with the three crayons weren’t that good, but when he was finally given twenty-four crayons to work with, Kenny was able to draw better pictures. One of these was a picture of a butterfly with a woman on it, and when the psychologist asked him who the woman was, Kenny told him that the woman was his mother who would fly around and tell the teacher to give him an A instead of a D. This story was one of the first Kenny began telling, and he’s been telling stories ever since.

Where Paul is concerned, what he got from Kenny’s crayon experience was that, given the proper tools, anyone can create work that would amaze others.

As a child, members of his family would tell him how funny he was, and it took Kenny some time to realize that, instead of laughing at him, people were laughing with him, and his becoming a storyteller grew from there. Kenny also ventured deeper into storytelling by getting a master’s degree in it at the age of 55, and is presently only one of two deaf people to hold such a degree. He got interested in getting a master’s degree in storytelling after getting a bachelor’s degree in theater, when he heard about it from acquaintances, and he had a lot of fun going through the program. Kenny admits that he doesn’t have a particular process for creating his stories, which led to challenges while he was taking up his master’s degree. Instead, Kenny remarks that all he essentially needs to do is to read a story once, after which he can perform that story, with all its characters which, he notes, is different from the way a lot of people approach storytelling as, with the latter, research can be involved.

Although Kenny is deaf, he does get feedback for what he does and what he says from the way the audience reacts, as it does whenever he tells a story. Paul then remarked that Kenny is so good at touching the audience that he, Paul, is professionally jealous. “People like me, but they love him,” Paul jokingly remarks.

Kenny also points out that people aren’t what they have, giving an example from his own personal experience: “I may have had cancer, but cancer didn’t have me.” “It’s not what happened to me, but how I respond to that,” he adds.

For Paul, the elements that make a story worth telling or listening to are: a hero to care about, a villain to be afraid of and an epic battle between them - in more business-friendly language, a relatable main character; a relevant challenge that someone listening might find himself facing someday; and and honest struggle. For Kenny, it’s all about sharing himself, “opening up my heart,” as he calls it, as well as telling the story with love and compassion.

Paul and Kenny got together when they were speaking at the National Storytelling Conference in Covington, Kentucky, in June 2012. They had been speaking in different rooms, and one time, after they had presented, Paul and Kenny wound up sitting right next to each other, with Kenny’s sign language interpreter telling the latter what was going on. Paul was intrigued by the thought of a deaf person coming to a storytelling festival, and it was after lunch that same day that their relationship started.

Kenny admits that he included a lot of trauma and secrets in the book, so much so that he hopes that he’ll “still have family for Christmas.” He also remarks that, with the book, he and Paul are giving the readers the tools they need to be able to live their lives with the same kind of cheer that he does. “I am like I am because of my father,” Kenny further explains. “He loved me as his son, not a disabled son or a handicapped son.”

Paul remarks that Kenny is one of the most unique individuals that he’s met, particularly given how positive Kenny is after experiencing things that Paul admits would have made him bitter. His curiosity about how Kenny could maintain his optimistic outlook was one of the reasons he co-authored the book. Paul also notes that Kenny was agreeable to writing a book, as the latter had always wanted to get his story told, but didn’t know how to write (which Paul knew how to do), so the collaboration worked out well for both of them. Paul also acknowledged that, at the start of the project, he had a mindset which a scientist studying a subject so he can write Kenny’s life story. He quickly discarded that mindset when, after two or three interviews, he realized that he was learning a lot from the disabled Kenny, rather than the latter learning from the able-bodied Paul, during the process.

The title of the book came from the four days that Kenny and Paul spent together, writing it out, during which time the two sat and traded stories “from eight in the morning until six at night.” The idea was Paul’s, and Kenny admits that he thought the idea “insane.” That said, the process worked, and Kenny got another good story out of it when Paul’s son gave Kenny some insight into how a child would see him. Paul’s then-nine-year-old son had to read a book and write a report on it, then create a cereal box, complete with pictures and stories from the book all around it. The boy chose the book Paul and Kenny were writing (the first draft had been finished by then), and after presenting it in class the boy then kept it in his room until he gave it to Kenny.

Kenny hopes the book will help people learn to love themselves, admitting that it’s not easy to do that. “But if I can do that, there’s hope,” he remarks. Kenny also notes that 98% of all parents with deaf children do not know sign language, which results in the deaf children growing up lonely, as they exist in a silent world. Where Paul is concerned, he points to the 27 different life lessons which are listed at the end of the book, with half of these being for people with disabilities and the other half being for the members of the families of such people.

Kenny gave an example of how he views people by telling a story about a wheelchair-bound friend named Marty. Kenny told of a time when he through a door ahead of Marty and wound up closing the door in front of him, as Marty being wheelchair-bound isn’t in the forefront of his thoughts. Kenny only then realized that Marty was left outside in the rain and hurriedly opened the door so Marty could get in. Once inside, Marty then turned his head and began talking to the people around them. Kenny then noticed the people around them laughing, and when he asked what was going on, he was given the reply: “Marty’s making fun of you.”

“I can’t read your lips!” Kenny then complained to Marty.

“That’s because you slammed the door in my face,” Marty then replied.

“Don’t look at someone as if they have a disability,” Kenny then emphasizes, adding that, if a disabled child does something wrong, then he or she should be corrected just like any other child.

“Love yourself,” Kenny gives as advice to those who might be in the same situation as himself. “Just be you.” He also adds for people to be around positive people and get away from the naysayers. “Believe in yourself,” he adds. “Every time you look in a mirror, you’re somebody.”

Purchase from Amazon: 
Four Days with Kenny Tedford: Life Through the Eyes of a Child Trapped in a Partially Blind & Deaf Man's Body by Paul Smith and Kenny Tedford, Jr.

Eliza Factor on Caring for a Child with Periventricular Leukomalacia (PVL)

In this interview, Eliza Factor talks to Alexander “The Engineer” Lim, host of AuthorStory by alvinwriter.com about her book, Strange Beauty: A Portrait of My Son.


“We work better by working with other people and helping other people.” ~Eliza Factor

Although Eliza didn’t have a typical middle class life until she settled down with her husband, she describes herself as a “typical person” leading a normal life before her son, Felix, entered her life. She contracted chickenpox while she was pregnant with Felix, and this impacted Felix. He was born early and his being “floppy” after he was born was initially racked up to his being a premature baby. Eliza and her husband then began going to doctors and getting Felix tested before he was finally diagnosed with having periventricular leukomalacia, which is essentially when the brain’s white matter is damaged during fetal development. This has led to Felix’s combination of cerebral palsy and autism as the two major conditions which he has to this day.

At the time that he was diagnosed, at the age of one, nobody could tell Eliza if Felix would even walk or talk, and it was then that Eliza realized that her son wouldn’t grow up the way other children did. Eliza notes that diagnoses are the labels presently used today to access the services one needs, as even a diagnosis like “autism” is a basket terms to describe various conditions. She remarks that Felix’s conditions mean that he can’t do things for himself, although he can do such things as standing up, if he is helped. Eliza also notes that, despite the violent behavior that Felix exhibited, and despite having some limitations with communicating, such as describing things in the past tense, he is very communicative, with an ability to strongly connect with others and share with them an “infectious” sense of humor. Despite this, Felix apparently has a far more tenuous connection with his body than others, with Eliza hazarding that Felix can most likely feel pain but doesn’t know where exactly it comes from.

Felix lived at home until the age of ten, and Eliza describes life with him as “rich, full and exhausting,” as it was also during that time when Felix displayed cyclical, violent behavior, during which times he would hit himself for periods of up to three days straight. She wrote Strange Beauty after placing Felix in a residential school, where he could live in an environment where his needs could be met, and with her home now feeling empty, she had the time to reflect on her experiences with Felix. Eliza attempts to explain the process of her journey within its pages, to the point of embracing and accepting the disabilities within Felix and recognizing the disabilities in herself and in others, which was liberating for her. She also wants to use the book as a way to open up conversations about what it’s like to live with a disabled child, particularly those who can become as violent as Felix could, and points out that what is needed is more specialized education programs in public schools as well as training amongst public servants on how violence can escalate and how to de-escalate it.

Eliza also learned how to read other people’s body language after years of observing Felix. She also realized that she needed help from others, not only when dealing with Felix’s outbursts but also with other aspects of her life. She notes that public support for parents and families with children who have conditions similar to Felix’s is lacking at present. Eliza remarks that there are people who may look and act normal but who have conditions similar to Felix’s (which cause outbursts of violence and behavior) who are punished, rather than helped.

Eliza notes that there were people out in the street who would walk up to her and Felix and interact with them, with some offering to help and most just saying “hi,” which were positive experiences for her. She started a community center for families with children who had disabilities, an art and play center which runs on a volunteer basis (and which is intended to be an indoor place which was open to everyone), as well as to use disability as a way to bring people together. Eliza notes that meeting within the confines of the community center, is energizing and fun for members of families whose common thread is having a disabled child, as it brings out the best in her as well as with everyone else involved.

Eliza also notes that Felix’s younger sisters had a good relationship with him when they were younger, but were jealous of such things as needing to be able to put on their clothes by themselves while Felix was given help. Their view of disability is different from most people, which is highlighted by the story that Eliza gave - about telling her daughter about a game she played as a child, when she and other kids would ask each other about what disability they would rather have. Eliza’s daughter was confused by the story, as her daughter had never considered blindness or deafness as being a disability.

To those who would find themselves in a position similar to Eliza’s, her advice is to love the child as they are, to seek help when needed, and to follow the child’s lead, as the child will give clues to how they want to be handled, as such children shouldn’t be forced to be something they aren’t. She also believes that all of us are disabled in some way, and that there is a lot of fear about this, but that that is the way humans are and that is okay, which opens up freedom for oneself and others.

Purchase from Amazon: Strange Beauty: A Portrait of My Son by Eliza Factor