The Odyssey of Ryan Odland
May 2009
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Photo Caption: Ryan Odland explains about Usher Syndrome to his classmates.
By Elizabeth Spiers
Ryan Odland never completely understood how his Usher Syndrome affected him when he was growing up. Neither did the professionals who attempted to help him.
Now Ryan wants to help other deaf-blind people truly understand the impact of their hearing and vision loss on their lives.
“I want to become a therapist because many of the professionals with whom I worked while I was growing up did not realize the impact of my Usher on my functioning. For example, I often discussed with one therapist the problems I had with my socialization skills when I was growing up. I was having trouble making friends, but couldn’t figure out why. Also, even though the therapist made helpful suggestions and some of them worked, he didn’t figure out the underlying reason why I was having difficulty making friends.
“Later on, I met some professionals during my internship at MSSD who were able to explain how my Usher impacted my social functioning. They explained, for example, that it was easier for me to handle conversations in a small group or on a one-on-one basis because I could see people more easily in those situations. I had a hard time seeing people in large groups, so I tended to avoid parties and larger social activities. No one had ever explained that to me before. I want to be able to provide that same kind of assistance to other people in my work.”
Ryan, 26, has just completed the first year of his graduate studies in School Counseling at Gallaudet University. He graduated from the Rochester Institute of Technology in 2008. Ryan is thinking of becoming a therapist for people with disabilities in the future.
Photo Caption: Ryan Odland gestures during his presentation.
Ryan went on an interesting path to his current studies. “I majored in Computer Science when I started at RIT because I love working with and fixing computers. But I didn’t want to stare at a computer screen all day; I wanted contact with people and some variety in my job. Also, I was beginning to lose some of my vision and I was concerned about being able to find a job in this field. I switched my major to psychology. I also decided to pursue a master’s degree in school counseling.”
He also has just finished an internship with deaf, hard of hearing and deaf-blind students at the Model Secondary School for the Deaf (MSSD), on the Gallaudet University campus in Washington, DC. “I worked with the children one-on-one, and also educated them and the staff about deaf-blindness and the signs of Usher Syndrome. I put up some posters in the dorms and common areas recently that explain some of the symptoms of Usher and what to watch in students who may have Usher. For example, some deaf students may walk past you and not notice you signing to them or speaking to them.”
Ryan grew up in Minneapolis, MN. Minnesota and the Minneapolis area are noted for its strong services for people who are deaf-blind. “My parents have been very active in the deaf and deaf-blind communities. They became active as soon as they found out about my vision loss. I was born deaf, and they knew about it when I was very young. My vision loss was identified when I was five years old. However, I was 14 when we received a formal diagnosis of Usher Syndrome.”
Ryan, who has Usher 1, was not really aware of the impact of his Usher until he was 15. “I saw myself as pretty normal and very much like my deaf classmates. But when I was 15, I was told that I did not see well enough to drive. That hit me pretty hard. I realized then that I am different from many other people because I couldn’t drive.”
In 2003, Ryan met a therapist, Michael Brennan, who also has Usher. “That was when I first thought about being a therapist,” Ryan said. “I saw another person with Usher who was successful. He helped me to accept my Usher.” Shortly afterwards, Ryan went to Helen Keller National Center for training. “I met many other deaf-blind people and my experience at HKNC made me feel less alone. For the longest time, I thought I was the only person with the problems I experienced. I was somewhat isolated at home. I had friends who were deaf, but very few also had vision problems, so I dealt with things that they didn’t have to handle.”
Now that Ryan is attending Gallaudet, he is adjusting to a new city, a new culture, and a new environment where he has to confront his Usher. “I can watch the professors in class, but use interpreters so I can understand what the other students are saying. I really need visual information, which the interpreters can capture for me. I want to know if people are laughing, what their facial expressions are, what they are discussing in class. Fortunately, I’ve worked with several professors who are very experienced with deaf-blind students and know what my needs are.
“It is different for me as a student, though. I have a lot more homework and less time to socialize now that I am in graduate school. Also, I live off campus, so miss the social life I would get on campus. My classmates and I are starting to get to know each other, so that takes some time. It is also taking them time for them to get used to me and my Usher.”
Ryan said, “I would encourage other students who are deaf-blind to pay attention to ‘their second half’. Don’t focus only on academics. What are your social and support needs as well as your academic needs?”