Fredy Marneef (53) has known since he was 40 that he has autosomal dominant optic atrophy (ADOA). Before that, he worked as a taxi driver for Eurotransplant and the Blood Bank, among others. His father was known to have optic nerve disease and was visually impaired, but at that time it was not yet known that it was a hereditary eye disease. At the age of 40, Fredy's vision began to deteriorate. He especially noticed this during his work: he could no longer see the exits arriving on time. The optician found out that glasses would not help and Fredy was afraid that he would have the same problem as his father. The GP referred Fredy to the ophthalmologist at the Nijmegen CWZ. Fredy's suspicion unfortunately turned out to be correct. The papilla that normally turns pink in the photo was now largely white, so it has faded. This meant that many nerve fibers were lost from the optic nerve. Fredy only saw 15-18% at that time and genetic research revealed ADOA. In addition to the reduced vision, there is also disturbed color vision and Fredy has daily headaches around his eyes, the latter, according to his treating physician, occurs in 5% of people with ADOA.
Revalidation
Fredy's eyes have deteriorated rapidly within six months, something that normally occurs much more gradually with ADOA. Fredy was completely rejected and could no longer work as a taxi driver. He was supposed to receive occupational rehabilitation from Visio, but it soon became apparent that a normal rehabilitation process was more appropriate. In 2008, Fredy spent a year recuperating at Visio Het Loo Erf. He stayed here five days a week. In addition to learning practical things, attention was also paid to acceptance. Something that has been very important in Fredy's rehabilitation process. When your vision suddenly becomes much worse, you have to learn many things again and/or find skills. Most people with ADOA have a slow progression of the disease, which often happens unconsciously. In addition to learning a lot, Fredy also taught future doctors how to deal with visually impaired people and what it means to be visually impaired.
Back to work
After rehabilitation, Fredy went back to work. Not as a taxi driver, but in it muZIEum in Nijmegen as a guide in the dark experiences and as an audience leader. Work that Fredy gets just as much satisfaction from as he did with his old job. Here Fredy works together with other visually impaired people and visitors can experience what it is like when you are visually impaired or blind. During his work, Fredy also experiences what it could be like if his vision, now 5%, deteriorates even further.
Full-fledged person
Fredy is not ashamed of his condition, but ensures that people do not notice that he has a disability. This so that he is seen and treated as a full-fledged person, because let's be honest, even in 2020 people are still (unconsciously) excluded. People with disabilities can decide for themselves whether they can or cannot do something.
It is important to live in the moment, because before you know it everything is suddenly different and being able to cycle around with ease is no longer so obvious.
The muZIEum
The muZIEum in Nijmegen wants to increase knowledge and understanding of people with visual impairments by offering the public an exceptional and unique experience. In addition, the muZIEum wants to increase the participation and emancipation of people with a visual impairment in society. For more information, see https://muzieum.nl/
