Running at the speed of life: With disability as the norm

Let’s get straight to the point here: having a disability doesn’t mean you are completely helpless. It simply means that you are having to learn and do things a bit differently from those around you, and that’s something I have come to learn is not a failure. On the contrary, it makes you more creative, more determined and more enduring. It teaches you that while those around you may run their race faster, it’s not about how fast you go, but how you continue in the face of challenges.

The foundation for empathy and understanding is born out of your own struggle and suffering

You know how parents often talk about the moment they get outnumbered? Well, in our family, this is more like out-disabilitied. 2/3 in our family has a disability, and this is now the norm, not the exception. I think this is worth pointing out, because in our world, it often seems as if difficulties, particularly when it comes to disabilities, is seen as a bad thing. But I’m here to tell you that my disability, CMT, has definitely made me a better dad and human. It’s without a doubt that the foundation for empathy and understanding is born out of your own struggle and suffering. Without this personal experience, you can look on and analyse others’ struggles all you want, but, at best, you’ll be sympathising with them. It’s only at the point when you’re able to forgive yourself for not being, acting or measuring up to what you think you should be able to achieve, that you can learn to be understanding with those around you.

And this is where my CMT really shines. Having a physical disability that requires me to operate at my maximum all the time in order to do “normal” things has taught me that my pace is just as good as any other person’s pace. Just because they can run, doesn’t mean I can’t run. Well, in practice, I can’t, but when I walk, I expend the same (if not more) amount of energy as when others run. Without this, I could be a record-beating athlete (I was a strong and fast runner already when I was a child). The moment I came to this insight, my whole life changed. This lesson, even if it may seem trivial to some of you, is one of the corner stones of how I think and operate.

I’ll always understand how hard Amadeus fights for his place in this world

Now, being a father (and parent) means trying to understand how your child feels. At no point in life is this a harder job as when your child is unable to clearly convey even basic needs like hunger, tiredness and discomfort. And this is with a typical kid. With a child with special needs, this is on a whole other level. Without going into all the details of the challenges of my son’s Down syndrome, it’s safe to say that the worries of an average parent is just another Tuesday to us. At one point, I remember seeing a post on Instagram on how special kids are born to ordinary parents that then allows them to become extraordinary. I actually echoed the sentiment at the time, but the more I think about that statement, the more it doesn’t feel like it fits me.

I never chose to have extraordinary challenges, but now I see that our extraordinary son really was born into the right family who has already faced challenges that most parents around us will never experience. “Running at the speed of life” has never felt so appropriate, because at times, I have felt like I’ve fallen so far behind others, but then I came to the realisation that most haven’t had as many obstacles. As such, I feel very fortunate that my beginnings were rough, and that I, myself, have a disability, because I’ll always understand how hard Amadeus fights for his place in this world, and that makes me the special father that our special son needs.