How do you find a sense of belonging when you deal with uncommon or rare issues? How do you reconcile disabilities without losing your sense of self-worth? Are you selfish if you don’t stay and try to fix a broken system?
We recently returned from a trip to the United States. Part of the reason we went there was because of my rare neuromuscular disease, Charcot-Marie-Tooth. We attended an annual conference (2024 CMTA Patient & Research Summit) specifically for (family members of) people/patients living with CMT. Being part of that summit gave me a chance to realise that having a rare genetic disorder means being part of a very exclusive club that isn’t based on pity or fear, but based on celebration of all that we can bring to each other and to the world.
Having grown up and lived in Finland during various times in my life, there’s always been a nagging sensation that I must be doing something wrong. Whether it’s because I look Asian, speak Swedish (minority language in Finland), walk funny (CMT) or have (vocal) tics (Tourette’s), there’s never been a point when I’ve thought “people here accept me for me.” And that–I’ve come to understand–is something you can’t force on people. You can’t make people accept concepts that are alien to them, especially when the culture protects you from many of the harsh realities. This is probably also owing to Finland being a country with a very small, almost homogenous (~87% ethnically Finnish), population, so I recognise that (ethnic) diversity is going to be somewhat limited.
Don’t get me wrong: There are lots of things that Finland does well, but diversity and acceptance aren’t part of that. And as these things concern me and my family on a daily basis, it’s probably not hard to understand why thriving in a place like this is very difficult, especially when you’re gaslighted by doctors and the government, which have repeatedly tried to invalidate our needs/experiences with my or my son’s disability.
People can and should be different; that’s how you thrive as a society
Now, having spent a whole month in the US, especially with a child with Down syndrome, opened up my eyes in a way that previous visits there haven’t. Armed with the understanding and attitude that it’s not we who need to adapt, but society, it was a fresh breath of air arriving in a place that made us feel like we belong, even though we don’t officially even belong (since we aren’t US citizens). It highlighted a stark difference in attitude and willingness to understand your fellow human, and to not put it down to “not being like us.” I actually thought the CMT conference would be the highlight of my trip, as far as feeling like I belong, but the longer we spent in the US, the more we learned (through the many positive interactions with even total strangers) that we didn’t even have to attend special conferences in order for people to want to include us. It’s innate. It’s part of their culture that people can and should be different; that’s how you thrive as a society.
As the saying goes: “You can’t teach an old dog new tricks.” Well, it may not be entirely impossible for the Finnish culture to change somewhere, sometime in the very distant future. And, I’ve been told by many that I should stay and fight to change the system and get justice for the next person. I know they mean well. However, sometimes you also need wisdom to know when to abandon a ship that’s full of holes and sinking fast, because you’re the only one (or one of few) trying to save it. I think it’s incredibly naïve to think that we can do it alone, while everybody just looks on and wonders why we don’t try harder or what’s wrong with us.
It shouldn’t be a privilege to be accepted for who you are
This experience only reinforces the fact that we need to think about us and Amadeus first and foremost, which means finding another place to grow roots. It shouldn’t be a privilege to be accepted for who you are, and we’ve come to realise (and accept) that seeking a community that embraces differences doesn’t mean running away from something; rather, it’s running towards something. For us, this means a place where our experiences are celebrated and where we can find a sense of purpose with all of life’s dimensions.
PS. Look at this amazing, inclusive playground, with both Braille and sign language (ASL)!
Finntrovert 
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