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I survived (ableist eugenic medicine)

A blog based on a Facebook post 28th of July 2017.

This video is for many reasons troubling. It represents Kaden, a boy, as a hero because he is disabled and as a sufferer from his ‘disease’. Seeing this discourse on disability is exhausting because it’s stigmatising for him and other disabled children. It is also an unrealistic representation of children’s lives.

It is, in despite of the shortcomings, an important video for various reasons. Kaden has the same impairment as I have, osteogenesis imperfecta (OI). His parents were told that he had only a 5% survival rate for coming alive into this world. Now, nor am I a doctor or very interested in my impairment. I have, though, gone to conferences, read a bunch of stuff, in particular material on pregnancy and child birth for mothers with OI, and gotten to know a lot of people with OI, but I have never seen anything (except in the drama show Greys Anatomy) about low survival rates for babies with OI. I know some of them might need breathing aids and also some of us as we become adults. But that doesn’t mean life is over, obviously. I have never heard anything other than children with OI survive pregnancy and birth and overall have meaningful and beautiful lives. Of course, our bones can fracture very frequently, with the pain that comes with it and challenging times, but I still haven’t met a person willing to sacrifice their life because of it.

Kaden’s parents were told that he had a 5% chance of surviving. I’m going to allow myself to say that it is highly likely that it is utter nonsense. They were encouraged to abort him. They were not ready to do so and that’s why he exists. He likes superheroes, playing on the swings, computer games, building legos and then he often fractures his bones. He has parents who love him and believe in him and his future. He has a good life.

His parents could have listened to the doctors and aborted him. They could have been affected by the dominant representations and discourse of disability as a personal tragedy, defect and a burden for society – and because of that decided that his life wasn’t worth living. Not because they are cruel, but because sometimes modern medicine is cruel. A part of eugenics. But they didn’t. That’s why Kaden exists. That’s why he has a life.

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Me, a few months old, smiling in a bath tub, with my black hair all over the place.

It’s strange to think about my life being at stake, like Kaden’s, if my parents had known about my impairment; the innovations of my genes. They could’ve been in Kaden’s parent’s shoes. But the technic was different and so were the ethical views in medicine (to some extent). I survived. They survived. That’s why I exist. That’s why I have a life.

I deeply want to know how our health care system in Iceland, which has the power to produce knowledge for parents who are expecting a child, define and explain OI. How many children with OI have been aborted? How many children has Icelandic society missed out on? Because the statistics tell me that it doesn’t make sense that I’m the only one with my type of OI in Iceland. We should be at least around three (after I was born). But I’m the only one.

The thought of it scares me. And causes me much more pain than all my fractures together. They are around 200. It would be great if the gatekeepers of the health care system, who decide whether we are born or not, would be informed about that.

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