Always in the background
Balázs was able to study thanks to his mum
A young man in a wheelchair makes his way through the crowd in the Harmonie building, a woman following behind him at a slight distance. After he’s introduced himself, she joins the conversation. ‘Hello, I’m Balázs’ mother.’
The scene is illustrative of Magdi’s role in Balázs Markos’ life. To make it possible for the twenty-five-year-old Hungarian to study and work here in the Netherlands, she goes where he goes. She helps him when necessary, but otherwise she stays in the background.
Just like now: for an hour and a half, she sits at the next table, waiting patiently, declining to participate in the conversation but bringing her son a bottle of water when he needs it. One of the few things she says during the interview is a loving ‘he talks a lot, right?’.
You can tell from the way they behave this is everyday life for the two. ‘Usually, my mum waits for me if my lectures or meetings aren’t too long, because I can’t use the toilet by myself and I need help with lunch’, says Balázs, who recently got his master’s degree in international human rights law and is now working for the law faculty’s security, technology and e-privacy (STeP) research group.
Balázs has been disabled since birth. ‘I was born when my mum was twenty-eight weeks pregnant. I had a stroke when I was a newborn and fell into a coma for a while. I was in a pretty bad state.’ Afterwards, he couldn’t use his legs anymore and had lost part of the function in his arms. He also has asthma and allergies that require prescription medication.
I need help with pretty much everything physically
All of that means he needs someone around all day. ‘I need help getting out of bed, getting dressed, and having breakfast every morning’, he sums up. ‘I don’t need to be fed, but I need someone to prepare my breakfast and get my coat on.’
He also needs assistance with lunch and dinner. ‘Basically, I can do the academic part by myself, but I need help with pretty much everything physically. So my mum had to be here with me.’
Magdi used to be a medical doctor. ‘But my mum realised when I was four she couldn’t work and care for me simultaneously, so she quit.’ She has been his full-time primary caregiver for twenty-one years.
The intention was for Balázs to live on his own in Groningen when he moved here in 2018. His mother was supposed to come with him only for a transitional period – his father and siblings still live in Hungary. ‘But the Dutch health insurance system changed my plan’, he says.
My muscles aren’t strong enough to hold up my body if I get too fat
He needs daily assistance, as well as regular physiotherapy, but since he is a foreign citizen and was unable to work next to his studies, he wasn’t eligible for Dutch health insurance, he explains. While he can apply for reimbursement from his Hungarian insurance company, the payout is based on the lower cost of treatment in Hungary. ‘These circumstances made living independently impossible.’
Still, they like to keep an optimistic attitude to life instead of complaining. Magdi always finds a way to enjoy life, she says. ‘Luckily, I have some friends who live in Groningen, so we go out sometimes.’ She uses the time she’s waiting for her son to read books.
‘We were lucky’, he says. ‘We managed to find a place with all facilities on the ground floor and we convinced the landlord to let my mum live with me by explaining my situation.’
They also managed to get him his prescription medication. ‘Because my mum was a medical doctor, she knows what I need and brought it from Hungary.’ But he’s had to give up physiotherapy since moving to Groningen. ‘That’s beyond her competence’, says Balázs. It means his physical health has deteriorated in the past few years. ‘I have trouble with spasms and spasticity and I’ve also gained weight.’
Adding a few extra kilos may not sound like a big problem, but for him, it is. ‘My muscles aren’t strong enough to hold up my body if I get too fat’, he explains. He tried to partly replace physiotherapy with exercises. ‘But it’s not as effective.’
So why did he risk his health to study in the Netherlands? ‘Because Hungary isn’t very disability friendly. I first went to law school in Budapest, but the building is pretty old and although it has elevators, they often didn’t work. Sometimes I couldn’t arrive in lecture rooms on time, and there was no option for a livestream or anything.’ He decided to drop out after one semester.
In Hungary, people in wheelchairs are also seen as mentally disabled
Another thing that motivated him to leave were the stereotypes that still exist in Hungarian society. ‘People in wheelchairs are also seen as mentally disabled’, says Balázs. His parents had to fight for him to attend a regular school, instead of one for physically disabled kids. ‘The level of education is much lower there. There are no challenges for people who have an intellectual gift.’
Even nurses and doctors kept talking to him like he was a kid. ‘I’m tired of explaining I’m a mentally healthy adult again and again.’ He had travelled to the Netherlands with his family a few times ‘and I never had to do that here’, he says. And so, because he wanted to keep studying law, he chose to come to Groningen.
Leave the nest
Now that he’s graduated and has found a job, he’s been able to get Dutch health insurance. His next goal is to finally live independently. ‘Maybe in a house where nurses and social workers can help’, he says. But he and his mother are still trying to figure out whether that’s a possibility. ‘Because it’s not really common in the Netherlands for a disabled person to work full-time.’
He will still need someone to help him, but like other young adults, he wants to leave the nest. He just wants a normal life. ‘It doesn’t mean I’m abnormal. The reason I use the term normal is just because it’s an easy way to say that I want the kind of life that most people have.’
The past five years have been hard, Balázs says. ‘But it’s been worth it. I got out of the comfort zone that people in my situation are in. And I’m no longer separated from the world.’