So, I had this weird moment last fall. I had booked dance classes with my friend, and we were really looking forward to them. And then we had our first, it went well. I liked the dance, I liked the people and I liked the music. But afterwards my wrist was hurting.
The day of our next class had been a bad day, my wrist had hurt at multiple times and I did not feel like it would have been a good idea to force it to do more physically demanding things that day, dance class was cancelled for the day.
The next week was the same. So, there I sat with my friend. On the top floor of our school, having to debate with myself if it was worth the additional pain to do something I liked. The answer was no, dance class was cancelled for an unforeseeable time. But while I was sitting there, debating with myself, I suddenly realised that the injury that I had been living with for maybe two and a half years at that point was a disability.
For some reason, that also made me think more about my autism diagnosis. I rarely think of it as a disability, it is just a part of what makes me awesome. But there and then I understood that not everyone saw it as a strength. I want to be careful here, it is something that makes my life more difficult, not some weird supertalent that people can write books about. But it is me, and if people around me behave respectably then it is more of an asset to me, than a hindrance.
I hadn’t really thought about my diagnosis and what it meant for me. On one hand I was still myself, nothing had really changed. I knew that I was autistic before it was confirmed. On the other hand it felt like everything had changed. It was official. It was something that others could use against me. Like the police, and military (fuck them and their “Come as you are” campaign). People could use it to discriminate against me.
I understand where the discrimination comes from, uneducation. I’ll even admit that I at one time thought of myself as autistic but not “Autistic”, kind of like how Isak in Skam was gay but he wasn’t “Gay”. Or how most girls go through a “I’m not like other Girls” phase. It is an attempt to distance oneself from a stereotype portrayed in the media that isn’t recognizable. An attempt that I realised was meaningless once I had spent time on parts of the internet where I could interact with all types of people and get educated. I came to the realisation that I am not better than anybody else and that all ways of being is equally valid.
Other fun things that happened when I got my diagnosis, I started seeing casual ableism. What a joy. My best example of this is from the fall of my first year at Hvitfeldtska. It was in English class, we were reading The curious incident of the dog in the nighttime (btw, bad book) and we were preparing for a written exam with the book as a base. We were to answer three of four questions with well thought out arguments and all of that fun English stuff. And since my (former ) English teacher wanted all of us to do our best he gave us one of the questions beforehand so that we could prepare properly. The question was “Do you think that Christopher is a reliable narrator?”. Objectively a really good question, it both tied on to the book and to the lessons we had had about different kinds of narrators. We had to discuss the question two and two. As far as I could hear they all said no, he isn’t a reliable narrator. And while it wasn’t said outright it was his autism that made him unreliable. It was partially harrowing to hear the girl I was paired with list characteristics that Christopher and I share, as a reason to why he was an unreliable narrator. That was my first time experiencing casual ableism and one of the reasons that I started writing.
To this day I don’t know what my teacher’s answer to the question was, or what he intended with it. All I know is that in my text I wrote passionately about how the question was discriminating and wrong. It was one of the first things I wrote at Hvitfeldtska but it will without a doubt always be the one that I’m most proud of. But that moment has stayed with me, perhaps it is why I have problems telling anyone about my diagnosis. Or perhaps I just think that it doesn’t matter and isn’t anyone else’s business.
Another fun thing that happened was that my parents didn’t have any problem at all telling all of their acquaintances and friends. To this day I don’t know when we meet if they know or not, it makes me uncomfortable. I am a strong believer in being open about mental health in order to end the stigma, but be open with your own mental health, not anybody else’s. No shade to my parents, they did what they thought was best. I have seen way too many “family youtubers” and celebrities talk about things that their children do that I wouldn’t want the internet to know if it were me, so I have a vastly different opinion about what parents should share. I think I’m going to write a full text about it, so look forward to that.
Anyway, back to my disabilities and back to that fall day on the top floor where I realised that I had been failed by the system.
It was partially fun (/s) to realise that my wrist pain was in fact a disability. It is a pain that I have lived with since eighth grade, and I had never considered it a disability before. I had cried about it, I had been in unimaginable pain due to it and I had feared because of it. But never had I considered it a disability, because you know, a disability is something like being paralyzed or having lost a limb, something that affects your life daily.
That day I realised that it does in fact impact my life everyday. That I hesitate to do certain things because I don’t want to be in pain, that I think and worry about it regularly and that I wasn’t able to live my life to the fullest due to it.
There are two ways I was failed by the system. First one, no one realized that I was on the spectrum or that I was a “gifted” child (aka I’m really good at school). Had either of those things been realized earlier I would most likely not have suffered for three years and my education would have been more stimulating. I like to credit books for surviving school.
Second one, no one took my pain seriously enough at the hospital. It took two weeks before I even got to see a doctor and she just sent me along to some physiotherapist that told me that I had a weak wrist. She didn’t even check my grip strength (it is perfectly fine!). I came back and I came back and I came back. It took two years before they sent me along to a specialist! Two years of pain and fear and uncertainty. Two years of no progress. This last year has been better, I feel seen, heard and helpt.
I guess what I’m trying to say is that all pain is valid and that disabilities comes in all shapes and sizes. Just because someone has it worse doesn’t mean that you don’t have it bad, and all bad things should be taken seriously and treated. It doesn’t have to be as it looks on TV.
For those of you that are curious of what’s wrong with my arm, no one really knows. A lot of ideas and a lot of tests are happening but so far no definite answer. The most common answer is that I will grow out of it in my mid twenties because that is when you start to stiffen, really looking forward to five to nine more years of pain (/s).
BTW, The Incident with the dog in the nighttime is a bad book and sad stereotypical representation. The awful thing is that when I was researching different disabilities autism was the last one I looked up just because most of my understanding came from bad representation in media such as the Incident.