I was scrolling through IG when I came accros an account of a mom of a child with OI (my lovely bone gene diversity). She was announcing the publication of a children’s book authored by herself and her child. The title was ‘One day I will walk’. My heart sank.
I have been contemplating on whether I should give voice to this for a few days because criticising the ableism of parents of disabled children is hard. In the majority of times they are doing their best to navigate a world that was not made for the person they love the most; their child. They themselves, like the most of us, have been brought up in a culture that favours able bodied humans and devalues disabled humans. When their disabled child enters their life the rooms will be filled with voices telling them that their child’s existence is sad and wrong. That the child needs to be fixed somehow. But the thing is; we have to be able to have difficult conversations with parents of disabled children. And they need to listen because in the end of the day they are often our most important allies and advocates through our childhood. And even longer.
My heart sank reading this title because her child is worthy whether they walk or not. It’s not my job to assess whether this mother’s child will walk one day but in all scenarios they will at least need to use mobility aid partly. And you know what? That’s a-okay!
Never in my entire life as a disabled woman have I longed to walk. I have no memory what so ever of grieving my inability to walk (or run or jump). Walking is meaningless to me. I honestly don’t get what the fuss is about.
I know this doesn’t hold true for every disabled child or adult. I get it. But we really need to get real about this walking business. Walking is important first and foremost because it is a normative way of moving through the world. It is important because the built environment is designed for walking. It is important because sitting or lying down has been labelled as weaker and less respectable or formal. Walking is a sign of strength, health and wealth. But I have to break it to you; its harmful nonsense.
When a parent writes a book with the title ‘One day you will walk’ they are sending the message to their child that until they do they are not good enough. They are telling them, most likely without realising, that while they are not walking they are not the child they have always dreamt of. They are very possibly imposing their own wishes onto a child that may not have realised that walking is the better option according to an ableist society. They are also sending a message to other children who will read this book that a child who does not walk is not whole. And that walking children are more worthy of love, respect and belonging.
It’s not okay and being a parent of a disabled child does not give a right to tell that story. Children’s books representing and including disabled children are so important. But who tells the story and chooses the narrative is crucial. Maybe this mother’s child would choose this narrative as a disabled adult. That’s fine. But I am pretty sure most disabled children would choose the title ‘One day I will be accommodated and celebrated in this world whether I walk or wheel’.
May that book be written.
The Wheeling of Shame and Resistance 