As ambassador of the Usher Syndrome Foundation, Joyce de Ruiter, who suffers from Usher Syndrome herself, regularly brings the foundation to the attention of the media and gives lectures as a professional speaker and inspirer. With her story she inspires organisations to be resilient and flexible in times of change. In this way she holds up a mirror to the faces of hundreds of professionals, managers, entrepreneurs and their employees: go down or go on?
TEDTALK: WHAT YOU SEE IS NOT ALWAYS WHAT IT IS
Machteld Cossee, ambassador of the Usher Syndrome Foundation, makes the audience in her TEDTalk experience what living with Usher Syndrome is like. Hearing little and also being forced to look at the surrounding world through a very narrow tunnel is frightening to a lot of people and difficult to imagine too. The possibilities to compensate are lost and it is a lifelong process of dealing with loss and adaptation.
TEDTALK: A LIFE WHERE IT IS DARK AND QUIT
When she started her study for photographer, Lotte Klaver was diagnosed for Usher Syndrome, an incurable hereditary disease that will gradually make her both deaf and blind. She was 17 years old at that time. Her younger sister Roos, 15 years old at that moment, received the same message. Presently, she travels, lives life to the full and uses her voice to create awareness for a disease that has been known and identified for over a hundred years already, but for which there is no cure (yet).
TEDTALK: THE POSITIVE POWER OF NETWORKING
Carol Brill lives in Dublin with her daughter Sara. Carol was diagnosed for Usher Syndrome when she was about 20 years old. She decided that she would not let her impairments take control of her life. “My future is largely determined by the choices I make and not by my limitations.”
When Carol lost both her father and her son within a short time, she fell into a heavy depression. She also found it difficult to accept her Usher Syndrome disorder. She had the feeling that as soon as she would accept Usher Syndrome, she would also give up on life.
In her TEDTalk Carol tells the people how she came out of her depression and eventually also accepted Usher Syndrome without loosing control of her life.
Speech, sound, sign language and movement come together in this eclectic theatre experience for and by people who cannot hear and see. What is living in a hearing and seeing world like? Sometimes this is tough and often it is really great. It is an exceptional play based on the life stories of real people, including the story of the Dutch Paralympic swimmer and world champion (Rio de Janeiro, 2009) Michel Tielbeke. In this project he made his debut as an actor. In Touch is part of the inclusion project of Inclusion Theatre and Theatre of Nations, established in Moscow. Source: Nederlandse Doofblinden Connexion (DBCX) [Dutch connexion for deafblind people]
TEDTALK: H.E.L.P. – Humanity’s Essence, Living Proof
Being born with a rare genetic disorder called Usher Syndrome Type III, Rebecca Alexander lost both here eyesight and her hearing in her teens. However, her courageous journey towards self-confidence and acceptance was only fully completed when she learned to accept the help offered by others.
Rebecca Alexander is psychotherapist, author and fitness instructor. Born and raised in the San Francisco Bay area, she is presently living in New York City with her mini golden doodle Olive. Rebecca became well-known nationally by the release of her memoires Not Fade Away: A Memoir of Senses Lost and Found.
DANCE: FIRST ENCOUNTER SENSE X
A dance project in cooperation with TanzTangente Berlin (Germany) Royal Kentalis and Mich Foundation.
In cooperation with German professional dancers, Dutch dancers suffering from Usher Syndrome developed a dance based on inclusive dancing. The dance production was performed before an audience during the ‘Holland Dance‘ festival in The Hague in 2015.
TEDTALK: WHAT WE CAN LEARN FROM PEOPLE WITH USHER SYNDROME
This TEDTalk was held on TEDxIslay in Austin, Texas on 15 May 2010. All speakers were deaf.
Robert Sirvage tells in sign language about his life with Usher Syndrome.
SONG: WELCOME TO THIS SMALL WORLD
He was born deaf. And he will be blind as well. Jeff Horsten sings a self-written song about his impairments on YouTube.
“I want to inspire people. I do not see myself as a person with impairments. I am just Jeff.”
He sings the song together with singer Jorien Habing. The text is about the ‘tunnel’ through which Jeff experiences his life.