ASSISTIVE TECHNOLOGY - MEET JIM MARKS

James Marks, or "Jim" as many referred to him, was one of Walsh University's most notable guest speakers - one Walsh students will surely miss. Jim passed away recently due to his battle with cerebral palsy.

37-year old Marks who served as a representative for Prentke Romich, (www.prentrom.com) a Wooster based company that specializes in assistive technology for students with disabilities, was an active associate to the University's education program. Frequenting professor of Intervention Specialist Education, Dr. Jeannie DeFazio's courses each semester, Jim met with students practicing in the field to discuss working with students with disabilities. And who better to reach them than someone who knew what it's like to be a student with a disability.  (Click here to access Jim's speeches: Speech #1 - "Early Education"   Speech #2 - "Special Education")

Jim had cerebral palsy and, in fact, used Prentke Romich's "Pathfinder" device, the company's most sophisticated augmentative tool that allows people with disabilities to communicate. The Pathfinder is a very intricate keyboard not unlike a laptop computer except with a unique system of icons, letters, and numbers that can be manipulated to form codes, words, and sentences. It can even be hooked up to a computer to download materials.  The premier augmentative computer is also a step up from the company's Liberator, another sophisticated communication device, both significantly more functional than Jim's previous resources, which used to consist of a hand-made word/alphabet board, a typewriter and a mounted head device to punch the keys. 

Jim was anything but disabled as he communicated very effectively with the Pathfinder device. He used a laser pointer mounted via a headband to type words on the keyboard. In an electronic wheelchair with his Pathfinder mounted in front of him, he typed what he wanted to say but more so, said it. The complex device enabled him to produce an audible, digitized voice to relay his messages as well and even enables one to manipulate pitch patterns to sing songs.

But it's not the so much the machine as the man behind it. Using the light-guided device to operate the Pathfinder, Jim could aim the light to the keys to locate and select an intricate network of keys and codes to type what he wanted to say. This can take years of learning intricate patterns to construct words.

"I am still learning," said Marks. 

Though Jim was often called "disabled," he was really no different than you or I. He was an Eagle Scout, played sports, and worked. He was able to bowl (He was in a bowling league and scored a 300 game!), play cards and soccer, sing, and perhaps most importantly, teach others about working with students with disabilities.

Most of us take for granted the ability to chat with one another. To communicate for Jim was a way of life and a gift that allowed him to share with others his life experiences. Each semester at Walsh, he did just that, addressing future educators like the ones he had over the years. He has been a guest speaker for Dr. DeFazio's ISE (Intervention Specialist Education) 440, Augmentative and Assistive Communication and ISE 347, Sensory, Communication and Health Interventions classes for the past three years until his recent passing due to the cerebral palsy. He told students what it's like to lead his life, a normal life with only one hitch; the stereotypes that came with his so called, "disability" - a disability he more than overcame.

Though Jim efficiently used his Pathfinder, he was not beyond communicating without it. Using a communication system known as the "E-Tran Board System," he could point his head to various points on a "memorized" chart of letters and numbers. Anyone trained in the E-tran system can follow movements to the points at which either a letter or number can be identified. One of Jim's chief forms of communication, the E-tran Board System is a square of plexiglass on which the letters of the alphabet and numbers are mounted for communication via eye pointing. The system of letters then can be utilized to spell out words to communicate. Seemingly easy to memorize this is not unlike learning a second language. With a little time and practice, Jim and his mother Lettie memorized the placement of the letters and have stopped using the plexiglass board. Mother and son communicated quickly and efficiently as Jim spelled out words and sentences across an invisible plain of letters and numbers while his mother "read" them. Jim used this as purely a back-up, fast way to communicate when his Pathfinder was not available. Eric Jameson, Jim's caregiver, had also memorized the E-tran system and could communicate almost instantaneously with Jim without the presence of the board. (Learn more about E-tran at the University of Washington's Department of Speech and Hearing Sciences - Augmentative and Alternative Communication Website - depts.washington.edu/augcomm)

Eric Jameson, began working with Jim in September of 2002. Excited to finally be able to stay at home and not leave with his mother, Jim and Eric hit it off wonderfully. Roughly learning the E-tran system in only a couple of days, Eric began his relationship with Jim and to watch them communicate was truly amazing as many times, Eric read Jim's most animated form of communication, his body language. Often guessing at words and sentences before Jim spelled them out, Eric began to read Jim with or without the E-tran system. Jim's functional facial expressions and body language were often enough to tell the story.

"Working with Jim has been very rewarding," says Jameson. "He is an amazing person. I have learned more in the last year then ever before. Jim has a great out look on life and being around him you can't help feeling that is where you need to be. Jim has become like a brother to me and his mother is like a second mother."

Prior to meeting Jim, Eric worked factory jobs until a career change prompted him to become a member of VOCA ResCare, a Kentucky-based firm that provides services to people with disabilities as well as youth and adults with special needs. There, Eric has found his calling helping people with disabilities. However, Eric doesn't consider Jim "disabled."

"We went to a Wal-Mart one time and went through the checkout and the guy said, 'can I help you sir,' to me and I looked at him and pointed to Jim and said, 'No, not me, you can help him,'" says Jameson. 

Dr. DeFazio first met Jim in 1974 while working in her first professional position as a speech pathologist for the United Cerebral Palsy and Developmental Disabilities Center of Stark County. Her first student, Jim was eight when their friendship began. Due to the fact that this was prior to the passage and implementation of the landmark legislation, Public Law 94-142, the "Education for all Handicapped Children's Act", students with significant special needs were excluded from attending their local public schools. Congress reauthorized and amended the act, and it was renamed the "Individuals with Disabilities Education Act" in 1990, commonly known as IDEA. IDEA was then reauthorized in 1997 and has been undergoing reauthorization at the present time. (Learn more: Link to www.cec.sped.org or www.cesa7.k12.wi.us/sped/issues-2002IDEA/2002IDEA.htm)

Jim continued to progress with DeFazio's and his parent's help. Jim and family lived in New Philadelphia, Ohio but because there were no comparable programs there, they drove to Canton daily to allow Jim to receive educational and therapy services at the center. Lettie began work as a bus driver and assistant at the United Cerebral Palsy and Developmental Disabilities Center of Stark County, which led to her daily accessibility to the center and her son. This allowed the staff to work closely with Jim's mother, which has proven a vital role in Jim's success.

"The center provided services for individuals with disabilities of all ages, preschool through adulthood," says DeFazio. "Although Jim's significant motor difficulties due to his cerebral palsy limited his abilities to speak, it was apparent on my first day of work at the center that this child was bright and in fact, had a great deal to say. He communicated primarily through his eyes, prompting others to ask questions in order to participate in a conversation or respond to his wants and needs."

Having never worked with a child with such significant physical needs, DeFazio collaborated closely with the center's occupational and physical therapist, Jim's classroom teachers and always, Jim's mother, Lettie. Realizing Jim had much to say and needed a more productive way to express himself, the contingent developed several basic communication boards and instituted a system with which Jim began to type via a headpointer and adapted typewriter. Just prior to the modern advances of computers and technology, everything was handmade. The typewriter even had a key guard to eliminate errors when trying to hit specific keys with the headpointer. With the precursor to the Pathfinder, Jim began to communicate more and more effectively, requiring a constant increase in words and symbols on the board and advanced ways to communicate. Jim began to develop literacy skills, which led to his abilities to read, spell, and use grammatical sentences through his adapted typewriter and communication boards.

Since his association with DeFazio, Jim has gone on to successfully teach numerous others about augmentative technology and living with a disability. Among his other accomplishments, he spoke at the Ohio State House to lobby for funding for assisted living and was featured in the Akron Beacon Journal in 2000 for his ability to use high-tech augmentative computers and overcome life's obstacles. He was also named Ohio Public Image's "Self-Advocate of the Year" in 2000 by REM-OHIO, Inc, an affiliate of REM Inc, a service provider for home healthcare and people with disabilities. Dr. DeFazio had hired Jim to write letters to teachers and parents to be featured in Walsh's Website in the Education section under "Teacher Resources" prior to his passing. These letters were to be for students and parents affiliated with people with disabilities.

For more information on Walsh University's Intervention Specialist Education Program, please contact Dr. Jeannie DeFazio, jdefazio@walsh.edu.