STAR Point Transcript - Christopher Harmon
>> Sam: Good evening. And welcome to the Disabled and Proud. We bring you insights into, ideas about and discussions on disability culture.
My name is Sam, and I'm the host of this show. We're playing a prerecorded show tonight on Chris Harmon, who is a multi disabilitied author. And I would like to thank Earle Harrison for providing me this prerecorded show. This is a show done by STAR Point, or the show is STAR Point. So without any further ado, we will start. Thank you again, Earle, for this show.
>> EH: Arising from an inner voice, one man's imagination builds a world of music, color and motion.
Welcome to this edition of STAR Point, a project of the Minnesota STAR Program, a System of Technology to Achieve Results.
This episode is a departure from the traditional enclave of professionals, educators, vendors, and representatives from government agencies. Instead, this program focuses on an individual with many stories to tell and a truly fascinating manner with which to tell them.
Christopher Harmon is an author and film maker who just happens to be deaf, blind, quadriplegic and on a respirator. While the stories that Christopher tells with boundless enthusiasm are rich with imagination and painstakingly transferred from memory, you will find this story to be both fascinating and inspiring. Most of what you are about to hear was composed by Christopher himself. I'm Earle Harrison.
No one is certain exactly when it first began, but the first detectable signs appeared when Harmon was six. His normally gentle and fun loving personality changed dramatically with uncustomary rudeness towards others and a tendency to behave carelessly and dangerously, such as riding his bike in front of on coming vehicles.
This perplexing switch in nature coincided with the birth of Harmon's sister, and doctors assured parents it was nothing more than a classic case of sibling jealously, advising them to exercise strict discipline. But as the months went by, the situation worsened and now the boy was behaving like a cornered rat, often attacking others unprovoked.
Finally, suspecting that something just wasn't right, Harmon's parents checked him into Indiana State University near his home where he underwent nearly a month of intensive testing. There doctors discovered that the boy was suffering from combined hearing, vision and balance loss, but were unable to determine the cause. It became clear that Harmon wasn't being rude. He simply wasn't able to hear people talking to him, nor was he being careless. He couldn't see the cars coming at him. And his animal like behavior was due to the effects of being repeatedly punished, from his perspective, for no reason at all.
>> RA: When he was about in second grade, I suppose, and I was pregnant with his sister, and he started ringing bells at me.
>> EH: Here's Christopher's mother, Robin Anderson.
>> RA: I would say, "Chris, shut the door." He would go, "Who is at the door?" Or "What's on the floor." I asked the doctor, and he said, well, it's an attention thing because you're pregnant and, you know, you're doing things for the baby to come. Don't give him what he was looking for if he's not responding accordingly.
Then I started noticing that he was looking at the side of my head when he would talk to me. Again, once the doctor said, again, he's looking for attention and tell him if he doesn't give you eye contact then take away whatever, something special for him. So I had explained that to him. And I said, "If you don't give me eye contact," then I'm afraid that, we have this thing, a lady across the street had a girl about six, eight months older than Chris. I would take them to the drive in to see a Disney movie, or it would be just our time with our older kids. He asked me a question and he didn't look me in the eyes, I said, "Then I'm going without you." And he cried for two days.
I'm, like, okay something is not right here. He would not purposely sabotage something that meant so much to him and be so heartbroken over it. The family doctor said, "I'll send him to Children's, but if you're not going to do what they tell you." I said, "It's not that I don't do what the doctors tell me. It's just that when you beat your head against a brick wall and it continues to bleed, you may want to stop."
>> EH: Not until Harmon was admitted to Children's Hospital in Philadelphia was it found he had an extremely rare neurological condition known as spinal cerebral degeneration that bottlenecks communication between the spinal cord and the cerebellum. At that time, and still today, there was very little known about this disease. Doctors did know that it was a progressive condition that would see gradual deterioration of motor and muscular control and loss of other functions somewhat similar to muscular dystrophy.
Medical specialists gently advised the parents to expect the worse, saying that Harmon would not live past the age of 10. This grim prophesy was extended to 12 and then 15, until finally doctors gave up guessing and said Christopher will die whenever he damn well feels like it. And now Harmon is 34 and still chugging along through the prairie, sure and steady.
Shortly after being diagnosed, Harmon and his family moved from Indiana to Eden Prairie, Minnesota. The town's school board took one look at his file and concluded that if a student cannot hear, see or walk, he must also surely be cognitively dysfunctional and proceeded to dump the boy into special education.
But scholastic aptitude tests showed that Harmon, who loved to read and never left the library with less than the maximum number of books allowed, had an IQ far above the standard for a third grader.
After a year and a half of heated debate, Harmon was returned to the mainstream classroom and began working with his first sign language interpreter. This incident, however, triggered an identity crisis within the boy that lasted into his early adulthood and was to be a foreshadowing of the many trials and hardships that were destined to haunt him for the remainder of his life.
Today, Harmon is deaf, legally blind, a technical quadriplegic, confined to a wheelchair, dependent on a respirator for most of the day, and can only take liquid nourishment through a surgically implanted gastric tube.
>> KD: He was fed with a G tube which to me was really sad, because Chris loved food. And a lot of what Chris did revolved around food, socially and that kind of thing. So he was no longer able to eat.
>> EH: Long time friend, Kelly Dunn talks about some of the challenges faced by her as a blind person trying to maintain her life long friendship with Christopher through social interaction and the logistics of what turned out to be very innovative methods of communication.
>> KD: He was also no longer able to speak so that I could hear him. That posed a new complication for us for communicating, because he couldn't talk to me anymore. But in true Chris fashion, we adapted. He's always been amazing at adapting to whatever situation he lives with. And so we developed this new method of communication where I could still finger spell to him. And you have to sign really close to his face so he could see, but then he still has movement of his arms. So he makes a fist and then he draws the letters on his chest. And I put my hand on his hand and I can communicate with him that way. It's slow, but we can communicate. And we'll have whole conversations that way. But if there's an interpreter available, it's a lot easier.
>> EH: Because of the combined effects of the tracheotomy, respirator, and his hearing loss, Harmon has no voice. He, quote, talks to an interpreter who reads his lips, a rather slow and tedious process, as well as one that requires months for an interpreter to learn and become adept in. Dianne Spicer is an interpreter who works with Christopher about 12 hours a week.
>> DS: American Sign Language, ASL in itself, is a visual gestural language. So we use things called classifiers to represent, there's a certain hand shape to represent a car, say, and then that car can do whatever a car can do. Go over bumps, crash, roll over in an accident, go fast, go slow, turn a corner, et cetera. And with pure ASL there's much more of that classifier used. And word order, grammar and syntax are not at all like English.
Just for a simple sentence, a person might say, in English, "Do you want to go to the store?" And in ASL it would be more like, "Store want go, you?" So you put the topic first, what you're doing, and then what are you going to do with that.
So Chris is of the preference that he would want to see the English. So he would want to see, "Do you want to go to the store?" each of those signs in English order instead of ASL grammar order. The learning curve for him was very, very difficult. Chris doesn't sign, so we as interpreters lip read him, which is very, very difficult. The statistics show that only 30% of spoken English is visible on the lips. So we are trying to muddle our way through that other 70% to get at Chris's meaning. And in the very beginning, it's a very frustrating process for both Chris and the interpreter because both are trying to be understood, and working very hard to make that process happen. But it does take a while.
If we're stuck on a word that just cannot be seen on the lips, Chris will spell out a letter on his chest using his hand, the shape of an A or a B or whatever letter. But actually now it's to the point, because I can understand him much better, I would say I probably understand now up to 95%. So good for Chris that I'm only having to ask for clarification on 5% of his communication instead of 70%. There are good days and bad days.
>> EH: Harmon is able to see people and objects and enjoy such activities as watching TV, working on his computer, and enjoying the beauties of nature as long as objects are within a foot of his face. Many barriers frequently come into Harmon's path, but with a bit of creativity he's usually able to vanquish those obstacles.
For example, there's currently no assistive technology that allows Harmon to independently operate his computer. But he side steps this problem by dictating to his interpreters who type for him. The interpreters do more than facilitate communication: They are the vital element that links Harmon to society and enables him to live a normal and fulfilled life. And he's acutely conscious of this fact.
>> JF: Being the employer of people that he very much has to depend on in order to be a self actualizing individual.
>> EH: John Fillic is the director of the Children's Program at Deaf Blind Services of Minnesota. The hearing child of deaf parents, John became fluent at sign language at a very young age and very quickly built a rapport with Christopher during the ten years he spent employed by Christopher as a personal care attendant and sign language interpreter. Today, John simply refers to Christopher as his best friend.
>> JF: And these people that he depends on also become his friends. It's almost inevitable, when you spend as much time as you do with Chris, in fact, it's almost important, because to interpret Chris to the rest of the world, you have to get a sense of his personality and who he is. It becomes rather complicated, as one tries to understand Chris and to interpret him to the world and at the same spend all this time with him. So there's moments of tension where it gets a little tricky to resolve. Like sometimes you have to make it big, I'm talking from the point of view of an interpreter or personal care attendant. 40 hours a week, then something comes up and you're faced with a choice, did this event that comes up, do you need to pay attention to it and show up five, ten minutes late to work or even call Chris up and say, "You know, I realize work begins at 4:00 but this is really important."
From Chris's perspective, so much of his life depends on those few minutes that from his perspective it's crucial to him, because he can't really do anything. And so whatever issue that may have come up for the interpreter, in Chris's eyes may or may not be as important. It's those sorts of tensions that come up once in a while.
>> RJS: As a different interpreter, you want to offer the client not only the conversation that's going on but also the environment.
>> EH: Rhonda Jones Shaffer works with Christopher as an interpreter about 25 hours a week.
>> RJS: For example, what it's doing outside. Perhaps what staff is saying nearby. Just treating the client as if he would have a set of ears that worked and could be hearing. A joke can be happening out in the hall or maybe even a conflict. It's real important to pass along information like that. The downside of it is people will make the assumption that Chris won't hear it because he's deaf and maybe even not know that aspect of a deaf/blind interpreter, and so there's been a few occasions where it's not been a real comfortable situation of passing along maybe what should have been private information but again when they're making it public in that hearing area that I have. I guess that's maybe one my biggest struggles with deaf/blind interpreting. Just to make it real clear, that's the position I'm in. That everything goes to Chris. And then kind of trying to do it in a way that maybe would guide him for the next time.
>> EH: When asked what the most important thing to remember is when communicating with a person who uses a sign language interpreter, the overwhelming consensus was...
>> DS: First and foremost is just always talk to Chris. Even though there's always another person there, talking directly to Chris is what they need to do. And many people now seem to be much more aware of that instead of "tell him" or "let him know," it's just speaking directly to Chris or any deaf person that you would meet. And just being comfortable with Chris's situation and not letting his disabilities stand in the way of what he has to say and his incredible ideas.
(Music)
>> EH: "That triumphant day that I secured full time sign language interpreter services after 18 months of battle in the courtroom is forever immortallized in my memory," Harmon recalls.
>> RA: Chris hung in there, and 18 months later, actually to the day, this was announced. And that night Chris had such a melt down. And it was like, "Oh, my God, what have I done?" And at the time he's not able to voice and, of course, he's screaming and crying and hysterical, which is very hard to watch when someone can't make any noise. And they're calling me going, "What do we do? What do we do?" "Did I do the right thing, am I asking things of my friends and taxpayers, things that I don't deserve and I don't have a right to?"
My God, I don't know how much longer he could have held on. Total melt down.
>> EH: "That was the day I found life cupped in my own hands," and that was the day that Harmon decided that it was time, time to unleash the deep inner secret that kept him from sinking into the quicksand of despair and propelled him into a tomorrow, bright with hope and optimism: His imagination.
>> KD: When I think of Chris, I think of determination. I think of someone who is a fighter, and every struggle he's gone through with his body failing him the way it is, and his mind being as brilliant as it is, it's it's amazing to me that he's able to just to adapt and move on.
>> RA: It's his spirit and his mind that I find amazing.
>> EH: You're listening to STAR Point, a project of the Minnesota STAR Program, a System of Technology to Achieve Results. Our topic today is actually several topics rolled into one. We're doing a profile on Christopher Harmon, an extraordinary individual, who, in spite of numerous sensory and physical limitations, is an accomplished writer and filmmaker. We're going to take a short break. When we return, we'll hear about some of the other projects that Christopher is involved with and some of the high profile individuals who support these projects.
(Music)
>> EH: Hello. And welcome back to STAR Point, a project of the Minnesota STAR Program. I'm Earle Harrison. My guest today is Christopher Harmon. While I don't have Christopher in the studio with me speaking with me live, most of what you are listening to are Christopher Harmon's words, because he wrote most of today's program.
In the second half of this program we're, of course, going to hear more from Christopher, but we're also going to hear from some pretty high profile individuals, who are not only astounded by the way Christopher goes about doing his everyday work, but wholeheartedly support his endeavors to bring family friendly entertainment back to the movie screen.
"Ever since the on set of my sensory impairment, I have lived in a world of silence, shadow and stillness. It was cold, dark, bleak, and totally empty. I couldn't handle the awful nothingness. Humans just are not meant to live in a void."
Harmon shudders as he recalls this memory: "I was sitting in a waiting room at Philadelphia Children's Hospital, frozen with fright, because I knew that more painful tests would begin soon. Mother pressed a book into my clammy hands. It was Eddie and the Fire Engine by Carolyn Haywood. I opened the book. And on the first page was magically whisked away into a world that was whole and rich in sound, color and motion. The void was gone. That's where I discovered my secret."
>> RA: He gave the graduation speech when he graduated in '88. At the time he could still speak, but if you didn't know him, you couldn't understand him well. So he was chosen by the teaching staff to be a male ambassador for the class, and the young lady that they selected, she read it for him. And this was at the time at the Met Center. There was like 16,000 people. There was not a dry eye in the house. Right then, it was, okay, he's a writer.
>> EH: By sitting within six inches of the computer monitor and dictating to a small army of interpreters, Harmon began to harvest the fruits of his imagination and put them down on the page.
>> DS: It's a very, very interesting process for us to type all of the ideas that Chris has in his head. It's fully Chris's book or Chris's ideas that he wants to have in print or on the screen or on the stage. He dictates basically everything that happens on the computer screen. It's basically that we are Chris's hands. And so he will say "quote," and then a sentence. "Period," "quote," "comma," "capital."
He does everything that a person who is typing would be thinking in their head about punctuation, about new paragraphs, et cetera. But he just has to tell us, which is also, for him, quite a burden. You know, it's a lot more work for him to have to tell us every punctuation, double spaced, et cetera, than if he were able to do it himself. But thank goodness he has the patience to do that so that his amazing stories and ideas can get out to the public.
>> EH: He has now completed four manuscripts, two stories each with two volumes. The story Little Miss Father Time was his first triumph. The story is a fictional historical drama which would most appropriately be placed alongside with such classics as Anne of Green Gables, Heidi, and Annie. And then came The Little Red Coat, which falls in the same genre as his other story. A key difference between Harmon's work and the ones just listed, is that Harmon's stories are designed to be appreciated by all age groups, not just by the youth.
Harmon is now actively seeking a printing house to publish and distribute his work. He's also seeking a talented playwright to adapt Little Miss Father Time into a stage script.
Every author must choose a medium for their writing. For Harmon it's fiction, but not just any ordinary fiction. He uses the loom of his imagination to weave threads of nonfiction into his stories.
"I feel the most comfortable in the total freedom that you get from writing a story that's entirely made up," explains Harmon. But at the same time, a story is stronger and more meaningful when you include real life morals.
"I have a wealth of insights that I've gained through my many years of struggles and I want to share the benefits of those lessons with other people."
>> RA: When he became desperately ill, when he coded, he was dying, and he looked up at a foster provider who was sitting there with him in the middle of the night when he woke up from surgery, and Chris said, "Am I dying?" And she said, "Yes, you are. So it's up to you. You think your life has been tough up from now, it's going to be ten times that now to live. So if you're tired, you're tired of doing all the stuff you have to do," she goes, "all you have to do is close your eyes. Or, if you want to fight, man, you better be prepared." He said one tear rolled down his cheek and he said, "Fight."
(Music)
>> JF: I found it amazing that I could come to him with any problem. He had a very reasonable perspective, one that that one wouldn't expect for a person who is blind and deaf, who can't eat, who has to breathe through a machine, who has limited mobility, virtually trapped within his own mind. And yet to have a sense of life that I think very few people have.
So my analogy is that he is this hermit, this mythical figure that lives within the mountain, who seemingly is devoid of all the realities down here on earth, but yet a person climbs to great heights to meet with this man and to pose the questions about life. And he always seems to have just the right answers. And you wonder how does he know this? That's what Chris is like to me. He always seems to be this man on the mountain trapped from the realities of day to day living like myself or even his other interpreters. He seems to understand a great deal.
And I have to ask: Where does that come from? I mean it's truly inspiring.
>> EH: Christopher Harmon has many irons in the fire at any given time. The most recent iron being Legacy Projects founded by Christopher Harmon. The mission of Legacy Projects is to bring family oriented entertainment back to the movie screen. Feature length films with inspirational and moral messages.
Harmon has received numerous letters of endorsement from such high profile individuals as former Vice President Walter Mondale, Senator Norm Coleman, and Saint Paul Mayor, Randy Kelly.
Christopher has also received a letter of support from Jane Minton, Executive Director of IFP, Minneapolis, Saint Paul, an independent film making organization founded by Robert Reford.
>> IFP Minneapolis, Saint Paul is a non profit arts organization for filmmakers and photographers. And we serve the regional area of Iowa, North Dakota, South Dakota, Wisconsin and Minnesota. And we have five other chapters in the United States, in Seattle, Miami, New York, LA and Chicago.
And we're each independently incorporated, but we focus on the regions, and we share the common goal of helping the independent artists create their work.
How we hooked up with Christopher Harmon is, a very old and dear friend of mine, Mary Hartnick called me one day and said, "I have this friend. And he will amaze you. And he has some disabilities but he's bound and determined to make a film, and would you talk with him?"
And so Chris Harmon called up, and we started a conversation about what are the components of making a film, everything from writing a script to financing, marketing, that type of thing. And Chris has a very, in some ways it's a unique perspective on what he wants to do. And in other ways it's a sort of a trend that I see out there in the industry at large, and that is that Christopher wants to make certain types of films that are inspirational and uplifting and motivational for people. In some ways that's a unique angle to take for somebody who is in the independent film world because there have been a lot of exploration of what I'll call the dark side of humanity.
And Christopher is not like that. He wants to make value based films that tell a story and at the same time entertain. Something along the lines of recent films like The Rookie, Shirley Temple films from the '40s and '50s, those types of stories. You know, he's just a really unique individual, and I think that there's a place for his vision in the broader world because that does seem to be a trend in film making in the industry, the commercial industry, the Hollywood industry.
I think there's sort of moving away from the dark, gloomy stories and there's more family entertainment and value based stories out there right now. And he's overcoming all of these challenges. And I admire his tenacity. He's going to stick with it until he gets the film made.
>> EH: Though Harmon's life is rich with experiences, he is very conscious of the fathomless wealth of inspiration that the human race as a whole can offer.
Legacy Projects productions will be designed to address issues currently at the center of the human condition in a fun and lighthearted manner, appropriate for audiences of all ages.
Legacy Projects will expedite this by soliciting scripts that tell a tale of insights gained through the experiences of others who face challenges in their daily lives.
If you would like to contact Christopher Harmon and Legacy Products, you may do so by sending an email to admin@legacyprojects.com. I'm Earle Harrison. Thank you for listening.
(Music)
>> Thank you very much to the STAR Program and Earle Harrison for this program. My name is Sam, and I've been your engineer tonight. This has been Disabled and Proud.
The views expressed on this show are not necessarily those of KFAI or its board of directors. This is KFAI 90.3 FM Minneapolis, Minnesota, and 106.7 FM Saint Paul, or www.KFAI.org.