The 21-year-old Endri Sulaj has been living in Utrecht for two years, and is a true hit on TikTok. He is in a wheelchair because he has Duchenne: a congenital muscle disease that affects and weakens the muscles. He calls himself ‘lilhandy’ on TikTok, and he also mocks his illness in his videos. A video that he announces with the text: ‘I’m going to walk for the first time in my life’, and ends with the text: ‘no of course not, I’m not disabled for nothing’, could count on 1.1 million views . It was his first real viral video, after which many well-watched videos followed.
Bored during the initial lockdown, Endri decided on a whim to create a TikTok account. His username? ‘Lilhandy’. “A lot of people don’t understand that name, but it literally means: small disabled person,” he says. He went for this name so that it would be a bit original. “You don’t really hear this name a lot,” he laughs.
He immediately noticed that TikTok seemed to be mainly a platform for ‘pretty girls, and guys who act beautiful.’ Endri decided to try the same as these youngsters. “I thought: I’m going to do pretty boy too.” He soon found out that it wasn’t for him. He said to himself: “Doing that beautiful thing is not for me, I leave this to the beautiful people.” He thought about what would be funny, and made his first video that same day.
In that video he wanted to show people in a very dry way that he was in a wheelchair. After he uploaded the video, he put his phone away. A few hours later, it turned out that it had already been viewed 10,000 times. “Suddenly I had followers,” he laughs. ,,Then I thought: OK, apparently people like me to joke about myself. Now the next video should get even better.” And so said so done. His subsequent films, in which he mocks his disability, were also a success. Within four months he tapped the 50,000 followers.
He would describe his account as ‘a cozy and positive account, which you should not take too seriously.’ He often notices that people do not know if he is serious. He constantly calls his sister ‘ugly sister’ in his videos. “When people meet me on the street with her, they say to me, ‘She’s not ugly at all!’ Yeah, duh, I guess. I’m not serious,” he says with a laugh.
Diagnosis in the Netherlands
Endri came to the Netherlands from his home country Albania about eleven years ago because of his illness. In Albania, treatments for his muscle disease were scarce, and only accessible to people with a lot of money. His family didn’t. A distant relative indicated that he knew a specialized hospital in Utrecht, after which Endri traveled to the Netherlands with his mother. Once in the Netherlands, he was also told exactly which muscle disease he had: Duchenne.
What exactly is his illness? ,,Easy to explain: I actually have an animal in my body that eats all my muscles”, Endri explains. “I’m just very weak. I can’t really lift anything.” Where other people go to the gym to get stronger, that makes no sense for Endri: “Those muscles don’t grow anyway.”
He also admits that he doesn’t know much about his own illness. ,,Of course I know what kind of disease it is, but I don’t really delve into it further. The problem is, if you start looking things up, you’re already dead on Google.” When people tell him they’re going to google his illness, he always stops them. “When people do go on the internet to look for information, it is really intense for them,” he says. ,,Then they sometimes say: but Endri, how can you still laugh? Then I say: why not? What else should I do?”
Sir, just say I’m disabled. That’s the easiest
On the day of his diagnosis, some explanation was given about what the disease entails. Endri then said to the doctor: ,,Sir, just say I’m disabled. That’s the easiest. I don’t need to know what it is or how it all works, I don’t care. That explanation isn’t going to make it any better.”
Life turned upside down
The plan was to return to Albania after two scheduled appointments at the hospital, but that plan fell through. After the diagnosis, the doctors told him and his mother: “We can’t let you go back. If we send Endri back, there’s not much that can be done for him.” His mother decided to stay there.
The two ended up in an asylum seekers center, awaiting the correct papers. It was only after eleven years that these were provided to them, only recently. Endri initially saw the move as a nice holiday, but that period was especially difficult for his mother, he says. “We didn’t have enough money to bring everyone here from Albania. I lived alone with my mother for eight years. Only after those eight years did my father and sister come to the Netherlands. So my family emigrated because of my illness.”
In the asylum seekers’ center, where he stayed for a long time, he met a number of ‘street boys’, who are still his good friends. They had previously urged him to start a YouTube channel. Rode? “They said, ‘Endri, you’re annoying, you’re self-mockery, and you make annoying jokes. That’s perfect.’” Endri didn’t want to start the channel at the time, because he was still quite young. His friends are thrilled that he is now so successful on TikTok. “They often say now, ‘You see, Endri, we were right after all.’”
Overcoming Positive Thoughts
On TikTok, he seems like the eternal optimist, with a dose of self-mockery that just doesn’t seem to run out. He does not play a character in the videos, he says. “I’m really like that, I joke with everyone,” he laughs. Are there times when it is difficult for him? “Not really,” he says, after a moment’s hesitation. Yet he remembers one moment when it did. ,,I play wheelchair hockey at a high level. A trainer who trained me a while back also had two sons with the same illness as me. One of those sons died of his illness. Then there was a short period when I thought: okay, I have this too, I think this will happen to me too.”
He soon felt very gloomy at the thought. After about a month, he managed to flip the switch again. ,,I convinced myself and said: no, I don’t care. Even if I die, I really don’t care. Staying positive really helps.” That is exactly what he wants to show with his videos.
Comments
His positivity seems to be contagious, because he gets few hate reactions on TikTok. He also suddenly has ‘a lot of female followers.’ ,,I don’t know where the boys are, but they aren’t there anymore’, he laughs. “I don’t care what other people think,” he emphasizes. Occasionally, if someone says something like ‘haha, he is really handicapped!’, he says back: ‘Gosh, I already knew that.’ ,,Then they leave you alone, because then you are not a good victim. You must always have self-mockery. If you scold yourself before, other people can’t hurt you anymore.”
Yet he does not necessarily make his jokes to avoid hate reactions. “Even if someone hates me, I really don’t care. I always say: there are so many people in this world. Not everyone is going to love you. That would be very strange.” When people comment under his videos that they find him annoying, it doesn’t affect him either. “Then I always respond: good, tomorrow there will be a new video.”
How does he stay so positive? Happy family and friends are really essential, he says. Fortunately, he did well with that. “But you shouldn’t think too much about things either. You should listen to people who give you positive vibes, not to people who say you can’t do anything. And I don’t just say this to people who are in wheelchairs. Even if you have another problem; just make jokes, and everything will be fine.”
Future
What does the future look like for him? “With a lot of money,” he jokes. “No, I really don’t care,” he adds quickly. He wants to continue making TikTok videos, and hopefully start YouTube later on. On TikTok, the 500,000 followers must be tapped. ,,It’s a bit high class to say, but I actually want to be the first disabled person with a lot of followers,” he says. “And with that range I want to show other young people that a boy in a wheelchair can also achieve something.”
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