Astrid Minnee, born in 1965, comes from Katwijk and is 59 years old. She works as a customer advisor at Passend Lezen, an organization that works for people with a reading disability. Astrid has ADOA, just like her sister. Their brother was luckier in the gene lottery and does not have it. “You have a 50% chance of getting ADOA if one of your parents has it. That is clearly visible in my father's generation. He comes from a family with eight children. Four of the brothers and sisters had ADOA and four did not. I myself have three children. Only my eldest son has ADOA.”
Although Astrid knows that she received ADOA from her father, she has not been able to talk to him much about it. “He did not want that. He buried his head in the sand and just carried on. That has advantages and disadvantages. He worked in a family business as a baker and kept that up for as long as possible. Even when he was eventually declared unfit for work, he continued working. He had to stop when the bakery installed proofing cabinets and he could not operate them because he could not read the numbers. Then he threw himself into his vegetable garden and started doing volunteer work.
Drivers license
When her son also turned out to have ADOA, Astrid talked to him a lot. “I prepared him as best I could for what was to come,” she says. “He is now 29 and functions well, just like I did when I was between 20 and 30. But I did have to tell him that it would be better for him not to get a driver's license. I myself have also chosen not to drive a car.” Although her son is not yet suffering much from it, Astrid sometimes worries about his future. “Before I found out about the Cure ADOA Foundation, I regularly googled to see if there were any new studies. For me, it will probably take too long before a treatment is available. But for my son, I hope that the progression can be stopped one day.”
The most difficult thing about ADOA, according to Astrid, is that the progression is not linear. This means that you do not gradually experience a little more trouble, but that your vision can suddenly become much worse. “I really took a dive when I went through menopause,” she says. “I was in the second year of my training to become an English teacher. I suddenly noticed that I could no longer follow along in the book or read what my teacher wrote on the board. When I was in front of the class myself, I could not see facial expressions or what was happening at the back of the class. As a result, I could no longer maintain order. In the end, I had to give up my training and my work as a teacher. That was of course very sad. But you have to keep going. So I quickly started looking for another job.”
Appropriate reading
Astrid came across a vacancy at Passend Lezen and knew immediately that this was the perfect job for her. “I had experience with customer service, an affinity with the target group and I love reading. So that was really something for me.” The work is very diverse. For example, Astrid helps users navigate through the app, gives book advice and provides support with administrative questions. “My own experience as a visually impaired person helps me in my work,” she says. “I understand what people are going through and that makes contact with customers very valuable.”
Passend Lezen offers reading material for all people with a reading disability. In addition to people with poor eyesight, this can also include people with a physical or cognitive disability, dyslexia, ADHD or a disorder in the autism spectrum. “We really have a huge range of books, newspapers and magazines that are available in various reading formats,” Astrid explains. “For children, we have books in large print. We also have braille books and a great many audio books. People can listen to books via the app on their phone or tablet or a special device, such as a daisy player.” The vast majority of the collection consists of Dutch-language books. But the organisation also offers access to books in English, German and French. For example, for secondary school students who have to read books for their list.
Astrid has been given several tools by her employer to help her continue doing her job. “I use a large-print keyboard and work on a large screen, where I enlarge everything with Control +,” she says. Although it can take longer to scroll through and navigate text because she zooms in so much, she has found her own rhythm. “My colleagues understand that it takes me a little longer, and that is very important. This is the first employer where I could really be open about my situation. I didn’t say anything to others because I thought they would see me as incompetent.”
“The best thing about my job is that I can really mean something to people,” says Astrid enthusiastically. “It is sometimes heartbreaking to hear that some customers have no help because their family lives far away. But it is satisfying when I can help them. Whether it is advising on books or navigating the app, I always try to think along as best I can.”
Newsletter
In addition to her work in customer service, Astrid takes care of the 'Featured' section in the 'newsletter' of Passend Lezen, the audio magazine Tussen de Regels. In this section, she gives five book tips on a specific theme. "By reading reviews, I get ideas for suitable books. I read all the books myself before they appear in the section. I do this reading via the Passend Lezen app, so with my ears. I used to like listening to classical music while I was reading, but that doesn't work when you're listening to an audio book," she says with a smile. "So I found a new combination that I like. While listening, I'm knitting. I have a project that I've been working on for years."
Astrid can still work on that project because it is in monochrome colours. “Unfortunately, I can no longer distinguish between some colours. But knitting in black and white, that is still possible. Because of my ADOA, I have learned to always look for ways to continue doing things that I like or find important. And I am not the only one, I know from the peer support days. When I talk to peers there, it quickly turns to what you can still do and how you have arranged that. Everyone I know with ADOA is working on continuing to function as well as possible.”
