I wake up with a familiar gnawing in my gut. I feel sick. Sleep eluded me last night, nightmares filling my brain with terror.
I feel the swell of my ever increasing abdomen on the bed. Middle age has not been kind to my body. Dave used to spoon me in bed and bend his arm as I he cupped his hand under my little remnant swell where my babies once resided. Now, his arm stretches, elongates, over my abdomen to tuck his hand under what feels like a gargantuan bulge, and all I want to do is push him away at the physical reminder of the repulsion I feel by my own body.
I sigh. This is not the fight I am fighting today.
I rouse myself out of bed. Pee. Pad though to the kitchen.
I am tired.
My brain is in full blown Autistic burn out. It is foggy, and painful. Stringing two cohesive thoughts together is a struggle. My eyes burn.
The internal battle is fierce. I wince as the steel swords in my brain clang together, reverberating through the rest of my body.
Sensitive. That is how my psychologist described me. “You are sensitive Sarah, and that is a GOOD thing. It means you care. And it is who you are.”
Sensitive to the injustices of the world has been my nemesis since birth. I am on high alert all the time, ready to do battle with those that would create the “other”. I have tried turning it off, I truly have. I have tried not to care so deeply, so vehemently. Resistance is futile. It is who I am.
Today, I had to do battle. I didn’t want to. No one really wants to do battle, do they? But as the day wore on it became clear that there was no avoiding it. The injustice was too glaring, too obvious. The otherisation, the superiority. It was all too much. Who will speak up, who will defend their – our – right to be seen, valued, considered worthy?
An internal dialogue begins.
The part of my brain that has been conditioned to mask, fit in, be more neurotypical, less neurodiverse, tells me I am being over reactive, it’s not your fight, just do what you need to do to get the job. We haven’t been employed in so long. Think of the difference you could make. Think of the money for god’s sake!
The emergent Austistic, neurodiverse part of my brain yells louder; we have been unseen for far too long, we need you, please fight for us, please!
I take a deep breath. Every hair on my body is standing on end. I have no choice. I am who I am. A leopard never truly changes its spots.
I breathe deeply, my eyes still burning, as I construct my email. I want to educate, I say, to help them understand the ideas of ableism, otherisation, and how much better and more productive it would be if they could be more inclusive. I desperately want them to understand the ever changing world of Autism, and how organisations that support Autistics need to adapt.
It’s long and wordy even though I have tried to take out all the emotion, the hurt, the anger, the frustration.
I kiss my job goodbye as I click “send”.
I walk around the house for the rest of the day in a daze. Moments like these sap every last bit of energy I have. The internal dialogue is never ending. Have I done the right thing? Am I being unreasonable? Am I expecting too much? How do I turn this need for social justice and to advocate off? I can’t. I am who I am.
I sit down to watch TV. Focussing is a problem. Impossible. I need to put these thoughts somewhere.
Until my diagnosis I had no idea really about ableism – how ableist I in fact was. Despite advocating for Jordan for 10 years, I had not one idea of how ableist I was. The truth is I wanted him to be less Autistic. I wanted it not because I was ashamed of him, but because I knew we lived in a world that works well for those who conform, and blend in. I hadn’t evolved to the point where I could celebrate the vibrant colour he brought to the world.
I am sad it took my own diagnosis to realise this. Shame fills me. There is so much truth in the saying “you have to walk in someone’s shoes to know them.” I had no idea.
Lived experience is the only way to fully understand the concept of ableism.
And now I reside in that place, my determination to advocate and rally against it is stronger than ever. I understand it now. I see it when it appears in front of me, and I have to confront it. It is who I am.