- Impact on personal life
- Personal experience
Common Experiences of People with Usher Syndrome
What common experiences do people with Usher syndrome share?
People with Usher syndrome often talk about how their parents kept the
diagnosis of Usher syndrome from them.
- My parents found out about my Usher when I was 8 but didn't tell me till
I was 24. An adult with Usher syndrome.
- My parents found out when I was 11, but never told me. I found out when I
finally went to the doctor alone at age 24.
People with Usher syndrome often don't meet another person like themselves
until they are adults. They often say they feel as though they have come home when
they meet large numbers of others with Usher syndrome such as when attending
meetings of the American Association of Deaf-Blind (AADB).
- I never met another person with Usher until I went to the Helen Keller
National Center when I was 30.
- I have never seen my child just be so "normal" before. A mother
commenting on her teen age daughter's interactions at an Usher syndrome Family
weekend.
- When I finally met someone with Usher I felt like this was my sister. We
could really talk about important things. A teen with Usher syndrome.
- It is such a relief to meet so many people with Usher. I can just relax
and have fun. I don't have to explain myself over and over.
People with Usher syndrome may be resistant to using certain communication
techniques and equipment needed to compensate for their vision loss. They often
discuss the pain of starting to use a cane for independence in mobility or tactile
communication for sign communication in dim light and later even in daylight.
- I was so uncomfortable when I started using tactile communication around
acquaintances. I could no longer deny that I have a serious problem. An
adult with Usher syndrome, Type 1.
- I miss my deaf friends but I am now more comfortable around deaf-blind
people who don't stare at my cane.
- From a 19 year old young man: Oh, I can use the subway just fine
without the cane, it's not a problem. I don't need the cane. When asked, But do
you think it would help you stay safe? he answered, Yes, but I
don't like people staring at me.
People with Usher syndrome are not always offered the training in skills they
need early enough to assist them in dealing with their vision loss and its impact
on their lives.
- This cane is wonderful. I am embarrassed when I think of how many years I
spent bumping into things and people while I was working. An adult
commenting on his mobility lessons. Now that I have had mobility lessons,
I know I can protect myself if I get caught in the dark. I don't need to be
afraid anymore.
People with Usher syndrome say that sometimes their peers avoid or reject them
because they are clumsy and bump into things. They may be the target of jokes or
teasing.
- People teased me and made fun of me. I was always being picked on and
considered killing myself. A young adult describing his high school
experience.
Adults with Usher syndrome complain about avoidance and lack of patience of
other adults in the Deaf community.
- When I put my hand out for tactile communication, some (deaf) people pull
away quickly, hurting my feelings. They act like Usher is contagious. I often
sit alone at parties. An adult with Usher syndrome, Type 1.
People with Usher syndrome state that they often have to explain their vision
needs over and over again, even to people who interact with them frequently.
- I work with the same interpreters every day, but they can't remember to
keep their signs small for me. A teenager in secondary school.
- I have to keep reminding my friends to offer me an elbow in dim light.
Why can't they remember?
from Ilene Miner, CSW & Joe Cioffi, M. Ed.: Usher Syndrome in the School Setting
Published by ...
Original address of this page:
www.tr.wosc.osshe.edu/dblink/usher-III.htm
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