What’s wrong with my arm, you say? I was born with a hole in my heart (atrial septal defect) and had open-heart surgery when I was 2 years old. There was a complication in the surgery that caused me to have a stroke that left me with hemiplegia cerebral palsy and semi-paralysis down the right-hand side of my body.
I always stop to pause quietly after I say these words. It never stops feeling surreal to say them. Not because these words are hard for me to say – the opposite actually – but, because for such a long time they have not felt like my words.
You see, I have spent most of my life in denial – not of my disability – but denial of the many ways that my disability prevents me from doing all that I do, even better. I was going to be an over-achiever even without my disability – so it certainly doesn’t help having a disability and then ignoring it – and over-achieving anyway. Maybe I thought I had something to prove? Maybe I was over-compensating? Who knows? But what I do know is that it was not sustainable, and I only realised this very late into my twenties when I collapsed in every way – mentally, physically, and more profoundly, emotionally. In the end it really was the best thing to ever happen to me. It made me face up to some harsh truths and make some big changes. But it was not easy and it was not quick – it was a long, hard and confronting process and one that required tough conversations and the daily discipline to forge new habits – most of them mental.
Whilst I take full responsibility for my ‘collapse’ and running from myself for so long, I do think that as a society we are conditioned to ‘help’ each other hide from ourselves. In such subtle ways we let normal (whatever that is) make us feel more comfortable. Because one thing that having a disability has taught me is that unfortunately your physical appearance, as an example, matters and it matters a lot more than it should.
I often think that the words I use to explain my disability feel foreign to me because I do not use them that much. I wasn’t really taught how to engage on the subject of my disability and one of the consequences of this I now realise is that it leaves me wondering if it was my fault in not making people feel comfortable enough to ask questions. I used to feel uneasy each time I would overhear a parent ‘explaining me’ to their child or when a close friend once told me that she often is asked to explain ‘what happened to me’ to people when they ask her and not me. It can feel hurtful that all these very personal conversations about me happen without me even knowing.
So I have come to realise that when I am asked to explain my disability myself, it creates an empowering opportunity to disarm any stigma in a way that I experience feeling different. I feel relieved when I am asked a question about my own body, because it normalises it in the context of small talk with a stranger. Talking about it lightens something that can often feel so heavy. And it fosters respect because it takes courage to ask hard and personal but sincere questions – to be compassionately curious.
This is my very personal journey and I in no way mean to speak on behalf of others. I also humbly appreciate that not all challenges are physical or indeed visible and that we are all fighting private inner and outer battles – that is the norm. I do know though that life has been made easier for me at the times when someone has gently given me the pause that I so often fail to give myself.
Sam Braithwaite lives in Hilton, KwaZulu-Natal and you can reach out to her below in the comments or at firstname.lastname@example.org
23 August 2021