Lucia Langerak: ‘I'm not one to sit on the sidelines’
Lucia Langerak was awarded a Master’s degree in Egyptology with cum laude honours in 2018. Her bachelor’s degree was also with cum laude honours. ‘I’m an exceptional Egyptologist, if only because I’ve never been to Egypt.’ She is now the coordinator of the Access & Support Platform at the University.
The Access & Support Platform was officially launched at the Diversity and Inclusion Symposium on 22 January 2020. The aim is to create a network for students and staff with a disability. There are more of them than many might think – around 8% of the students and an unknown number of staff – also because disabilities are not always visible. Alumna Lucia Langerak (26) is trying to get the network off the ground.
Chronically ill
‘From the age of ten, I already knew I wanted to study Egyptology. I thought it would be amazing,’ says Lucia. In the first year of secondary school, only one lesson in history was devoted to Ancient Egypt, which I obviously found way too little. In Greek my teacher let me work through the grammar of Middle Egyptian once I’d finished the work that had been set. I was dead set on studying Egyptology, even when I was diagnosed with MS in the last year of school.’ Lucia developed a chronic eye infection at the age of 11, but the link with MS was not made at the time. She also began to suffer from a loss of sensation in her limbs when she was 17. She was diagnosed with multiple sclerosis (MS) a year later.
MSMS is a disease that attacks the nervous system and causes inflammation in the brain and spinal cord. If the nervous system is damaged, signals from the brain fail have trouble reaching the limbs or other parts of the body properly, and bodily functions begin to malfunction or fail. There are different forms of multiple sclerosis, from mild to primary progressive. With most forms, you suffer from attacks (flare-ups or blips), which are what struck Lucia when she was 17. During a flare-up your symptoms worsen or new ones occur. Recovery may be in full, in part or not at all. Lucia doesn’t have the most progressive form of MS, but she does have the type where you gradually deteriorate, also between the flare-ups.
Mission successful
‘It was a huge shock to discover I had MS and I resolutely buried my head in the sand, and determined that I would do the degree anyway. Choosing Leiden was a no-brainer because you can’t do the programme anywhere else in the Netherlands.’ Lucia was super motivated and stubborn. She ignored her MS as much as possible. ‘That took a lot out of me. If I took an exam, I would be out of the running for some time afterwards. Now I wouldn’t even be able to take any exams.’ Lucia succeeded in her mission: she earned the cum laude distinction for both her bachelor’s and research master’s degrees, and each was with just one year of extra time.
Hitting the brakes
In the third year of her bachelor’s degree Lucia spent some time at Rijnlands Revalidation Centre after the umpteenth flare-up. ‘The treatment helped me realise that it was high time to hit the brakes. I wanted to do what I wanted to do and how I wanted to do it, but needed to take much more account of my limited energy and to make better use of it.’ She also realised that she wouldn’t be able to go to Egypt: ‘I’m the exception as an Egyptologist, if only because I’ve never been to Egypt.’ Fortunately, that isn’t too much of a problem because I’m more interested in the language and culture side of things. It would have been a bit difficult for me to take part in an excavation.’
Egyptology in Leiden
Lucia’s goal used to be to become a professor of Egyptology, but the reality caused her to change her mind. ‘I saw how lecturers are seriously overworked with the teaching, research and administrative work. Egyptology is also enormously competitive internationally. It is a very small field with many more candidates than jobs and opportunities. This atmosphere and the many uncertainties didn’t appeal to me.’ This is not a comment on the atmosphere in the programme, Lucia is keen to emphasise. ‘I visit regularly and am still in touch with many of my lecturers and fellow students.’ She has particular praise for Ben Haring, her master’s thesis supervisor, who she says provided excellent supervision.
Diversity and inclusion
Diversity and inclusion are important to Leiden University. It wants everyone to feel at home regardless their gender, ethnicity, disability and religion. Real life has not quite caught up with this ideal, but the Diversity Office is continually innovating. For adaptations, students with a disability can contact the Fenestra Disability Centre and staff with a disability their manager or the HR department at their faculty or department. However, whereas there is a women’s and an LGBT+ network, there is as yet no network for people with a disability at Leiden University.
During her studies Lucia came into contact with Eline Pollaert, who is now a project officer at the Diversity Office. Eline had been looking into the possibility of a University network for staff members with a disability for some time already, and brought Lucia on board. She has been working unpaid to set up the Access & Support Platform since 2018. ‘It doesn’t particularly bother me that I am working unpaid, as long as I get the facilities that enable me to do my job. This is difficult without an accessible workspace and a ULCN account.’
Why is a network needed?
‘Students and staff with a disability should be able to have their voice heard. The first thing we want to do is to set up an email address so that people can tell their stories in confidence. They can say what is going well at the University and where improvements could be made. We also want to organise workshops and other events that will make it easy for people to come into contact with one another. In May 2020 there will be a meeting for students and staff on the topic of “disability” and the role that the Access & Support Platform can play.’
Little energy
Although she has a disability, Lucia isn’t one to give up easily. ‘I begin the average day with about 40% of the energy of an average person of my age and am always tired. If I exceed my energy limit, I have to spend days replenishing my energy supply. But I still do this regularly. It’s frustrating that there’s nothing I can do to make me feel better. I am light sensitive (photophobia) and my sight is deteriorating. Walking is also becoming increasingly difficult. I’ve got a mobility scooter and a disability chair at home that makes it easy to move around my flat while seated.’ Fortunately Lucia has family and friends that can help her.
Acceptance?
When asked whether she has been able to accept what is happening to her, Lucia takes a moment to think. ‘For me personally acceptance is associated with giving up. I also think it’s a word that people are quick to use. Ask instead what I need to be able to deal with my disability and to function to the best of my ability,’ she says. ‘I have had to resign myself to being chronically ill and my health constantly deteriorating. But I still want to do what I can, while I’m still able. I’m not one to sit on the sidelines.’
Text: Corine Hendriks
Portraits: Melissa Schriek
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