Stichting Ushersyndroom places a high value on equality and participation. People with Usher syndrome should be able to operate freely within the foundation without fearing that they will find themselves in a (business) discussion directly opposed to their own service providers. We want to prevent any form of conflict of interest in the execution of activities within the foundation. Therefore, you will not find individuals in our organization who are involved in care and services for people with Usher syndrome.

“Ushers must be able to operate freely
without fearing that they will find themselves
in a discussion directly opposed to
their own service providers.”

Usher syndrome is a lifelong process of losing the ability to hear and see, which can ultimately lead to ‘deafblindness.’ Thanks to current diagnostics, parents are often informed early on that their child has Usher syndrome. This can be a very profound diagnosis for parents, raising the question: “When and how do I tell my child?” Young people who do not yet experience visual problems but know they have Usher syndrome live with the ‘sword of Damocles’ hanging over their heads, wondering, “When will I become deaf and blind?” Partners and children of people with Usher syndrome live daily with the limitations of their partner and/or parent. This raises the question: “How do you remain an equal partner or child of your parent and not become a caregiver?” Even if you reach the stage where you have lost a significant amount of hearing and vision, uncertainty and fear persist: “When will I lose the last remnants of my hearing and sight?”

The lives of people with Usher syndrome began like everyone else’s, growing up to become independent individuals in society. People with Usher syndrome want to continue participating in society among those who can hear and see well.

The term ‘deafblind’ is often felt as a stigma. Using the term ‘the deafblind’ addresses the person based on their limitations, rather than their humanity. The use of the word ‘Ushers’ for people with Usher syndrome is meant playfully and refers to the meaning of the English term ‘The Ushers,’ the messengers. People with Usher syndrome are the bearers of an important story or message.

“The Ushers, the messengers,
are the bearers of
an important story or message.”

The Ushers express what they need, what questions they have for assistance, what they find important, and how they experience their lives with Usher syndrome. Autonomy, respect, equality, and maintaining personal control are therefore the core values of Stichting Ushersyndroom.