Two terrible words were spoken with some force over my non-verbal, severely disabled daughter recently. A moment of frustration by one who briefly had care of my child and ought to have known better, but, for whatever reason, didn’t. I write this not to invite a pile on or indeed look for sympathy. Their words alone have brought enough shame on them, whether they know it or not. And they remain a good person who made a mistake. This is not about them.
But their words did damage.
Not so much to my child; as in an apparent, one-off moment of uncontrolled frustration, the words spoken went literally and metaphorically over her head. She could not/did not understand them, though she may have felt their force. Others heard, however. Worse still, another child heard. And that matters.
In the space of two brutally uttered words, a story was told to anyone in earshot, especially that other listening child. A narrative of shame. I wasn’t there to hear them spoken first hand and indeed I was calm as I wrote them down on a post-it note during a phone call I don’t think I’ll ever forget.
As I did so, my mind began to fill with many more brutal, ignorant words that have been spoken over her by others. People who have had an audience of others to hear them.
Risk. Burden. Problem. Tragedy. Sorry. Terminate. Deal with it. Get rid of. Did you know before hand? Didn’t you take the test?
Words that hurt then but more so now, alongside words of comparison that continually attempt to steal my joy. Not her joy, thankfully. That appears to be intact.
Words that suggest she is unworthy of life itself. That being human can’t surely mean including people like her. Genuinely? I think she embodies being human; and….quietly, simply, she includes the rest of us without question.
Lately, I’ve more keenly felt this unworthiness that is pinned onto her life in so many ways. Whether it is the lack of good health care and research that doesn’t just label each problem we encounter as ‘typical Down’s’, or the lack of opportunities for her to be fully part of our wider local community. Then there are the barriers around her physical development that do not seem to be there for children without a Learning Disability. Or perhaps it’s her future, and ours. What will become of her? What kind of opportunities will she have as an adult? How will we/she cope? Who will care?
This incident simply served as a trigger to all those feelings and more.
I closed the call and found myself in pieces.
She lives her life at the very opposite of the words spoken forcefully over her by those who do not know her or even wish to know her. Words spoken perhaps through fear of what they do not understand. Or in anger towards that which appears out of their control. They make sense of these emotions by framing her in the closed doorways of their own prejudice.
She is positioned to suit them. Their narrative. Their take on the world. Their needs. Their concerns. And she remains outside the door. Hurting no one yet on the receiving end of cold, harsh judgements. Others then hear this narrative and are empowered to proclaim it too.
Yet I am thankful that there are those people in her life whose doorways are open. They position themselves before her, at her feet. In front of her wheelchair not behind it or above it. Many of them. Not least her teachers, respite providers, disabled community support workers and volunteers, her family and our friends and more. People who take up a position not in some kind of worship, adoration or even deference, but a posture that looks up at her in order to learn and care. Not one that looks down in order to control.
The spoken word may carry truth, joy, hope, compassion and ultimately life to the listener. It may also carry fear, anger, pain, confusion, untruth and even bring death to the hopes and dreams of whoever might be listening.
A spoken or written account of connected events; a story.
The narrative about my child, and others with Down’s syndrome or other Learning Disabilities, has been collectively written. It is then spoken out by and to a society that stands above them instead of kneeling down and facing or even looking up at them. Control, fear, and, perhaps, an unwillingness to humbly learn from a different other. It’s the natural response for many and, before I knew my child, I was guilty of it too. This post is not about the condemnation of anyone.
I am thankful for those who open their doors, welcoming my child in, then daily kneeling down in front of her to care. Their words and actions are life giving, not soul destroying. They help rewrite her story.
And, because of them, her story has become a sacred text; highly valued and important amongst the Chronicles of what it is to be Human.
Reader, if you’ve read it, please pass it on to someone who has not; for no one should ever be called a stupid girl.