Lisa breaks taboos about albinism on Mount Kilimanjaro and at the workplace

A creative, intelligent woman who likes hands-on approaches and finding solutions, that is Lisa Luchtenberg in a nutshell. But this blond colleague is interesting in more ways than that. When she takes off her sunglasses, you see that her irises are a special shade of light blue. And when you enter her office, you notice it is quite dark. This is because Lisa has albinism, a condition that results in a pigmentation deficiency. This makes it dangerous for her to go to Africa, but she has climbed Mount Kilimanjaro nonetheless. Why did she do this? Lisa wants to break taboos about albinism, in the Netherlands AND in Africa: “So everyone can one day understand that people with albinism are just people with a bit of hereditary bad luck.”

Ignorance on albinism

“Albinism is a hereditary condition that results in a melanin deficiency,” Lisa explains. “As I have little pigmentation, I don't leave the house without sunscreen and sunglasses. I also see approximately 20 % of what most people see when I'm wearing my contacts. My irises let too much light through and that light reflects in my eyes, which explains why the lights in my office are out. It has happened occasionally that I was offered reading glasses while I was reading something with my nose to the text. Then I think: ‘Do you really think I wouldn't use glasses if those would work?’“ I understand that the offer was well intentioned. I know that there's simply a lot of ignorance. I also got occasional remarks about my light skin during the summer, such as ‘Do you never go outside?’ Especially if you're a teenager, such remarks cut deep.”

It affects me greatly that people are murdered because their arms supposedly bring good luck

Lisa continues in a powerful way: “But people with albinism in Sub-Saharan African countries are dealing with much worse issues. These can't be compared to the problems I run into. For instance, there are beliefs that their limbs have healing properties and that possessing an arm or a leg brings good luck. It affects me greatly that people are willing to murder a fellow human being for their own benefit. I'm lucky to be born in the Netherlands, but for those people, their entire environment is the enemy, including the sun. In order to generate attention for and awareness of these problems, I climbed to the summit of the highest mountain in Africa, Mount Kilimanjaro. The goal of this was that people with albinism all over the world can live safely and equally. With this feat of mountaineering, we raised a great sum of money and received a fantastic amount of African media attention. Besides being on the 8 o'clock news in Tanzania, a documentary on the climb was also made, which was broadcasted in various African countries!

Working with the lights out

“Back to the Netherlands: fortunately, I'm not treated differently at the workplace,” Lisa continues. After her HBO Art Therapy degree programme, Lisa started as a project assistant at the NESSC at the Faculty of Geosciences. “Since November 2017, I happily work within our little team in administration, communication and event organising. The work is great in its diversity and the results that we get are energising to me. But the most important thing is that my colleagues are very nice and, for instance, don't mind it when the lights are out. I have a big monitor and magnification software at my workstation, so I can read everything. I can also barely read the photocopier, but I have fully memorised the right buttons now. So my visual disability is not a problem, just a matter of finding solutions.”

Lisa does not mind telling about her 'disability'. “I prefer that people ask questions over them making remarks. I don't like getting remarks about my light skin, but I don't mind if someone asks questions about it. As the coordinator of the patient group for people with Albinism, part of the Eye Association Netherlands, I devote myself to the prevention of discrimination and stigmatisation. For instance, I'm convinced that it's a good cause to not use the word ‘albino’. It's better to say ‘people with albinism’, as that emphasises that someone is a person who happens to have a disability. ‘Albino’ almost sounds as if you're talking about an object. It's just like how ‘a person with a disability’ has a different overtone than ‘a disabled person’.”

Mixed feelings about the Dutch Participation Act

Due to her albinism, Lisa is within the jurisdiction of the Dutch Participation Act. “Working via the Participation Act is a double-edged sword. On the one hand, people with workplace disabilities get better opportunities to find suitable jobs, which I'm grateful for, of course. Now I have an employment contract at the UU. I’m very happy about that. But in the first year, I was seconded because of my disability. This didn’t gave me the same possibilities and rights as my UU colleagues. One example is that I had to take effort to gain access to certain systems, such as the Development Guide. The fact that I'm in an exceptional position on this policy-based level because I have a ‘disability’ hurts sometimes. But I mention these kinds of obstacles and I’m happy that people listen to it.”

People from the Participation Act are either confined to a wheelchair or mentally challenged, that's how people see it

“I also don't want to ask myself the question ‘Am I here because I contribute to a quota or because I'm good at this job after all?’” She adds: “I also have to contend with prejudices about the Participation Act. For instance, I got many surprised responses from colleagues about the fact that I'm under the jurisdiction of the Participation Act. Others seem to think that people from the Participation Act are either confined to a wheelchair or mentally challenged. But the scope is much broader than that. I see somewhat more poorly than others, but aside from that, I'm disciplined and ambitious. Eventually, I want to coordinate a social or societal project. With my background, talents and growing experience, I will definitely succeed. And on top of that, doesn't everyone have limitations and talents?”

By inclusion correspondent Rinske van Herwaarden