I was working in Italy for three years with people with physical disabilities. They mostly had muscular dystrophy. It usually affects boys. At five or six years old they already lose their ability to walk and by the time they’re twenty they can’t move any part of their body. It affects their cognitive abilities too, so most of these boys are living very isolated lives. This was the saddest part. We can’t really do anything about the disease. It’s a disease we don’t know the cure for. Yet their social isolation is something that we could do something about as a society. But we’re failing in it. To see the potential these people had that was never realised because of the barriers put in front of them.
When you actually get to know them you start to see that compassion isn’t the best thing to have for these people. We need to separate pity and empathy. Of course pity is not how anyone wants to be treated. But compassion is almost the same. We imagine that people who have some kind of disabilities are miserable. And it’s not necessarily the case. They do have a life that’s more difficult with perhaps less happy moments but it doesn’t influence how happy the person is.
This job broke a lot of stereotypes I had. I have come to understand a lot about autonomy and how everybody depends on somebody else. It’s society that puts somebody in the category of being ‘disabled’ and somebody else in the category of ‘able’ but nobody is really able to completely take care of themselves. That’s why we have a society. When you look at just one day, and look at what you actually did for yourself, it’s so little! I didn’t grow the tomatoes I ate this morning. The house I live in was made by others. There are so many things that I don’t do for myself. So not being able to move your hands or feet should be such a minor thing…
I think I fear stability a lot. Lately I’ve realised that I’ve got a bit addicted to change. Even though I was in Italy for three years, my job was still changing often. I decided to leave because I didn’t know what else to change with it. When you have so many choices or options, you want all of them. Then you get frustrated because it’s impossible. Then you kinda wish that there was only one choice.
I felt so much pressure from this mentality that you always need to do something productive. If you’re not careful you can easily lose yourself in this. I have this thing where no matter how busy I am I always need at least half an hour a day where I do completely nothing. And nothing at all. So many times I felt like I was wasting my time, I kept thinking of all the other productive things I could be doing, and then at some point I just realised that this is the time that I need to let my thoughts go.
One thing that I learned while being in Italy and meeting travellers is that our generation is about experiences whereas before it was about material things. Which in some ways is great, but it then becomes almost the same thing. It’s just consumerism of experiences instead. When do these experiences just for the sake of them, for the sake of making a check on your list, then it becomes a ‘material’ thing.
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