As a non-verbal autistic woman, Jenn Seybert is accustomed to the stares and gasps she gets from people when she tries to speak, but can only get out mumbled sounds. She realizes that others may become frustrated with her because they may not think she is paying attention when she inadvertently gazes in another direction while they speak to her. And, she is aware that some people might never understand her disability, but she has a message for them anyway: never judge a book by its cover.
“People with autism are a confusing lot. Though we have intelligent brains, our outward appearance may be looked at as retarded. While others are able to sit in their seats and have total control of their mind, this isn’t how we work. We are not in control all of the time. We want to comply, we want to please, but we might not be able to make it work,” Jenn, 31, explained. “But this doesn’t mean that people should not reach out and listen to us, because we have some very important things to say.”
Jenn, though lacking fine motor skills, is able to communicate through the use of facilitated communication. Up until seven years ago, however, she lived in complete silence. She described life without the ability to express her thoughts as torture. “Everything was upside down,” she said. “I kept trying to please, but was not able to let anyone know what I was trying to say.”
Jenn recalled one experience in particular that captured her frustration: “I was sitting in a life skills class at a day program I was in. The aide I had was wonderful and meant well, but he was teaching the class that if we were in a restaurant and the waitress handed us a dirty fork, it is okay to send it back. Well, how does a non-verbal, movement-impaired person send back a dirty fork? We cannot. We have to use that fork to eat if the person we are with doesn’t see it. It can be an extremely upsetting experience, but one an autistic person can do nothing about.”
Jenn credits the use of facilitated communication, which she was introduced to four-and-a-half years ago, with releasing her from her world of silence. Facilitated communication is an alternative means of expression for people who cannot speak or whose speech is highly limited, including persons with autism, Down Syndrome and other developmental disabilities. Individuals are assisted in spelling out words by facilitators, typically a teacher or parent, who provide physical support by holding their hand, wrist or forearm while typing out messages on a keyboard or letter-board.
Once a person with virtually no communication skills, Jenn, with the help of a facilitator, can now spell out words, sentences and whole paragraphs, something that Kendall, Jenn’s mother, calls amazing.
“Everyone is absolutely thrilled with Jenn’s progress,” remarked Kendall. “Right now, because of her limited arm movement, she needs someone nudging her shoulder to help prompt her to type words, but she is very close to typing independently.” Critics argue that facilitated communication is not a legitimate technique for assisting people with severe communication impairment, challenging that although a disabled person appears to be pressing letters, it is actually the work of the facilitator. Jenn, however, is not worried what others think; facilitated communication, she said, has changed her life for the better and she is grateful for it.
“Typing is not accepted everywhere, and we who use facilitated communication are constantly challenged in every step we take,” she said. “It isn’t fun being called a liar or having your facilitator accused of controlling your movements, but this is my way of communicating. Without it, I live in silence.”
It would be easy for Jenn to use her disability as an excuse not to do many things –– in a society that isn’t exactly disability-friendly, no one would blame her for not pursuing a “normal life.” Yet, each day, Jenn, and millions like her with a vast array of disabilities, achieve things that most people take for granted. According to Jenn, it is her faith that enables her to achieve the seemingly impossible and maintain a positive attitude.
“I love our Lord,” Jenn stated. “It is because of His healing hands I am to communicate and share my story.”
It is the grace of God, said Jenn, that brought her to college at Penn State. While there, she said, through His working, she was one of the first participants to be entrusted with “Self-Determination Dollars,” financial assistance that allowed students with disabilities to hire companions to join her in classes and assist them with tasks such as note-taking. The dollars were a wonderful thing, also facilitating her involvement in various state conferences where she shared with others how she manages her disability. Sharing her story, she said, is something that is very important to her.
“Autism is not a death sentence. Not being able to speak does not mean we have nothing to say,” Jenn stated. “There are many individuals with autism who need someone who will speak up for them when they cannot speak for themselves. By giving my presentations I hope to benefit others and give them a glimpse into the world of an autistic.”
In 2002, when Jenn’s family moved from Pennsylvania to Central New York, Jenn transferred to Le Moyne College in Syracuse, where she is currently a junior majoring in psychology. Monday through Friday, both mother and daughter make a 25-minute commute from Canastota. As Jenn’s facilitator, Kendall also accompanies her to classes. At times the traveling can become burdensome, but it is a burden Kendall gladly accepts.
“Especially with the weather, the trip to Le Moyne can certainly get overwhelming,” said Kendall. “But when we moved to New York my husband and I gave Jenn a choice of where she wanted to go to college. There was just something that she loved about Le Moyne –– an instant warmth she felt from the students and faculty. So, if she wants to be here, I will do anything I can to help her.”
Jenn knows all too well that disabled students face challenges on campus that most students will never know. Not only is there the concern of learning in a new environment when they enter college, but also they are forced to seek out accommodations they need to navigate the school and excel at academics. Bernardo DelSavio, who serves as the director of disabled support services at Le Moyne, tried to make Jenn’s transition to Le Moyne as easy as possible.
“There are 158 students on Le Moyne’s campus who, like Jenn, are dealing with a disability, whether it be physical, emotional, or a sort of learning problem,” DelSavio said. “What disabled support services tries to do is provide them with reasonable accommodations. If needed, we get them counseling and try to get them services, like note-takers, to ensure that they are as successful as possible.”
DelSavio pointed out that while a student without a disability might finish an exam in the allotted amount of time, a disabled student might need a little extra time. He works with professors to facilitate a working relationship between them and such students.
According to the Center for Teaching and Learning, over 1.5 million disabled students are presently enrolled in colleges and universities –– a substantial increase over previous years. DelSavio believes that this is a great step for disabled individuals, adding that their presence on campus is an inspiration to everyone.
“It is a privilege for me to be able to work with these students. They are an example to everyone that it is possible, through hard work and a positive attitude, to overcome obstacles. We all can learn a lot from them,” DelSavio said. Like Jenn, Kathryn Jedynak has overcome the limitations of a disabling disease and sought higher education. When Jedynak was three months old, she lost her sight as a result of receiving too much oxygen after birth. Although her blindness causes her to experience the world differently, Jedynak said she refuses to let her disability prevent her from living a normal life.
“I do not feel ashamed of my disability,” Jedynak, 23, said. “I believe that as a blind person I can do most of the things that sighted people can if I put my mind to it.” According to Jedynak, she, as a blind person, has been given a marvelous opportunity to make the most out of what she has been given. Just like everyone else, she said, God has a plan for her.
“I have been raised in a strong Catholic family,” Jedynak noted. “My relationship with God is no different than that of people who can see. I attend Mass and pray to God every day that I do His will.” With the assistance of her guide dog, Judy, Jedynak enrolled at Le Moyne as a full time student in the fall of 1998. Realizing all the extra pressure her disability would add, Jedynak remembered feeling concerned about the transition from high school to college. However, she was determined not to let her disability limit her potential to achieve.
“It was very important for me to continue my education after high school because I knew that without any education I would not be able to live a decent life,” Jedynak said. Jedynak obtained a degree in Information Systems from Le Moyne College in December of 2002. In the quest to improve her own life, Jedynak is also working to better the lives of the disabled community as a whole. She is looking for a position which will allow her to update technology that is currently inaccessible to blind people, such as cellular phones, or common household appliances such as microwaves. Recently, she designed a web site, educating web designers on how to make their web sites more user-friendly for blind people.
Dr. Martha Grabowski, who teaches information systems at Le Moyne, recalled what an asset Jedynak was to her class. She said that Jedynak might have taught peers in her Information Systems class more than they could learn from a textbook. “Students really benefited from having her in the classroom,” Grabowski said. “For example, when we were examining web site design, she showed them how they could accommodate disabled people in their designs –– telling them what would and would not work for a person like herself. Students remarked on how amazing she was.”
Jedynak, who recently learned how to water ski, said that she just wants to be treated like everyone else.
“I do not want anyone to feel sorry for my disability. It has never stopped me from doing something that I’ve wanted to do,” she said. “I can do anything.”