I Didn’t Know The Fires Were Cold

Two months on a mental health ward. Two months of locked up belongings, restricted outside access and making friends with wonderful strangers. Two months of using sign language for the first time and flying in a bubble of autistic joy. For all its faults, the mental health ward was wonderful. There are lots of ways to communicate using sign. It's important to recognise the difference between gesture languages and formalised sign language. Gesture uses hand signals to convey meaning. It is specific to the people communicating, and is almost like a personal language between two individuals. Over time, gestures become ingrained, so there is no need to clarify what they mean. This is how many of the world's 300 sign languages began, and how sign languages grow and evolve in the modern world. Gesture is my protected language, and I spoke a combination of verbal English and gesture on the mental health ward. My favourite gesture was Peace For Eleven. I was in room 11, and my locker w

 Hello, my name is Sophie and I am an activist.  It has taken me so long to get to this point. I used to believe I was an activist failed, that I had tried so hard and fallen at every hurdle. It wasn't a name I would have claimed for myself out of shame for being an angry disabled person. The reality is I'm not angry. I'm not an angry person; anger isn't really an emotion I have access to. Instead I'm a worrier who likes to help people. It makes my activism quite unusual and very effective. I've achieved a lot throughout my life, but I've had two major wins. The first win was my first ever accidental attempt at activism. I became an activist aged 14 whilst in hospital with severe anorexia. I wasn't expected to live, my mum was told to say goodbye. And in typical Sophie style, I decided I wanted to live. I started to eat, and there was hope. The doctors became very dismissive of my struggles. Why can't you just eat more, Sophie? Drink orange juice, So

Here is the key to my heart that I clench between my knuckles when I’m walking down alleys at night.   My heart stands alone beneath the street lamps wears a winter coat does not shake your hand. Does not give you directions. Does not give you it’s name because haven’t we all found crushed fairies at the foot of our bed and said nothing? Haven’t we all said goodnight to our dreams?   Here is the key to my heart that I left in my foster carer’s door latch when I was fourteen when home was the cavity inside my chest when home was the broken space between dawn and silence. I told my carer I’d fallen and cut myself. She bemoaned my muddy jeans.   Here is the key to my heart that I used to flip open the lock when my little sister was stuck in the bathroom.   Here is the key to the lock.   It is yours now. _______ I wrote this poem four years ago and forgot about it. I wrote the first verse again, without remembering, in the wake of Sarah

Before I became disabled I was in awe of disabled people who did things I couldn’t even whilst living with the hot fire agony of pain. Now I know how they did things in pain. They could do it because their pain was constant, so if they wanted to do something, they did it in pain. And they could do it because the disabled relationship with pain is different to the non-disabled relationship with pain. I didn’t know the fires were cold.  Many non-disabled people know disabled people experience pain differently. Usually they think disabled people get used to very severe pain and it no longer hurts. They think there is no fire. But disabled people usually feel pain at least as intensely as non-disabled people, and lots feel pain more excruciatingly. But the way the pain affects their life is different. The ways they manage their pain are different. There is a fire and the fire is cold. Disabled pain and non-disabled pain are different but they are both pain.  Hot fires burn hot and bright.