My Very Own Story
My name is Bartosz Jakubowski but you can call me Bartek for short. I’m 35 and I’m from Warsaw – the capital of Poland but currently, I live in a country near it and have been here since I was 12. I was diagnosed with autism when I was 2. My mom told me about it only when I was 16 and I was very happy about it because I finally learned what was ‘wrong’ with me. Actually, my thinking that something was ‘wrong’ with me was caused by OCD rather than autism itself. While my family already knew I had autism since I was 2, they only learned I had OCD as well after my 16th birthday. OCD stands for obsessive-compulsive disorder and in my case it’s a part of my autism, though it may appear alone too. Mostly because of this condition, I have to take some medicines, but I have to specify I take them not to heal it, as it’s simply impossible, but to manage its symptoms and make my life much easier than it would be if I didn’t take them.
When I was a kid, every place I went to during my education was an inclusive school, such as an inclusive primary school. Before my 16th birthday, I was sure I went to such places as ’an ordinary kid’ who had an opportunity to meet kids with disabilities. I would never have learned by myself that actually, I was one of those kids with disabilities. Fortunately, I eventually survived my education period, which, in the case of autistic people, isn’t a sure thing, at least not in Poland. It’s very sad, but for many people with this condition, school is usually the worst period of their lives because of misunderstanding from other kids and teachers as well. I remember that I had some difficulties too, mostly because of my OCD, I guess. For example, when I was in the 4th grade of primary school, I decided to switch to individual tuition, which started in the 5th grade.
I’ve been a self-advocate for autistic people for over 3 years and I’m very proud of it.
When I have been invited to speak at events, many people have told me that my words are very smart and important, which has made me feel very needed as the man I have become. Because autism is one of the disabilities, I think this also makes me an advocate for disability rights, at least in some sense. I mainly focus on autistic people, and this is the group I can speak about the best, especially since I am one of them. Anyway, I decided to become a self-advocate for autistic people because I’m afraid that if I don’t start advocating for better rights in my country, for myself and other people with this condition, our situation could become very bad in more than one aspect of our lives. I also believe there’s not much time for such changes, so it’s better to start as soon as possible.
I’m more than aware of the sad fact that autistic people are invisible in society, and that’s why their needs are often ignored. However, we do exist and ignoring us and our needs doesn’t mean we will stop existing. That’s why it’s so important to fight for our visibility, especially since many autistic people can’t speak and, in some cases, they can’t even write for themselves. That’s why my country – Poland – has more and more advocates like me who speak for them.
I hope this campaign can improve society’s knowledge and awareness about people like me. It shouldn’t just be about acknowledging the fact we exist but also understanding that we have specific needs that, without proper knowledge, will never be met.
For me, the hashtag #AutismNotInvisible means hope for a better life for me and all autistic people.
My social media:
Facebook: https://www.facebook.com/profile.php?id=100010045362358
