Welcome to the Dark Side of Disability

A glass jar filled with empty packets of tablets

I have wanted to write about this for a while now, but something keeps pulling me back. The unseen side of disability is my biggest personal struggle. What you see is not what you know, or think you know. To be unseen is often to be in the dark. I am physically disabled; it is obvious, instantly. Yet I do not think this is my disability. Officially I have phocomelia of the right arm. Of course, this is my disability too, yet I have made peace with the external me. It has only taken the best of half a century to do so. So what, you say. So what indeed. Let me share this force I am battling.

I view every abnormal fibre from my face to my asymmetrical frame. I look down and I see an absent right arm and malformed scapula every day as I dress myself. Nothing ‘sits’ straight. I mutter under my breath and move on. I am aware of my wonky hips. I notice physical changes to my left hand. I remind myself I am me and that is that. I am OK with this. These disabilities are visible, I see them, you see them. Yet, because you can see these differences it does not mean that is it. There are other things going on within my body. I can’t see them. I know they are there. I experience the pain and the fatigue they cause every single day. Trying to make peace with something that is unseen is a battle; one I fear is in my head. The unseen disabilities are not hiding, they are spending time together over in the dark side.

Dark side of disability

The dark side is the unseen side of my disability. I was not born with these things, the physical ones anyway. As my body developed throughout childhood, I noticed physical changes. When I moved into adulthood, mobility issues, pain, dexterity challenges, and fatigue started to affect my daily life. I thought the pain and exhaustion were because I was a working mum. I was wrong. These chronic things emerged (we think) because of my physiology. It caused enhanced wear and tear on my left side of my body. Now my nerves joined in, due to pressure from the wonky spine and hips. These late arrivals are very much part of me. They live in the dark side of my disability. Just like the Empire in the infamous Star Wars movies, it is a constant battle. This battle is between the dark side and the light side. They (unseen disabilities), just like character Darth Vader, use the force to control me.

If you are unfamiliar with Star Wars, the abridged version goes something like this. In the beginning we meet Darth Vader, aka Anakin Skywalker. He was not always a villain. He was born a slave and was head hunted as an apprentice Jedi (the light side). As he became an adult, the dark force consumed him. He played a critical role in creating the Empire (the dark side). He is the archetype villain. He uses the dark side energy to cause havoc*. I visualize the pain and associated conditions as forces from the dark side, that I need to fight against. They are destructive and cause havoc with my physical and mental health. In earlier years I had the strength to push them away. Nowadays, not so much. Sometimes I give in and let them win. All behind closed doors. Non-one must see. I get back up and live to take on the dark side again, alone.

Growing up, I do remember a dark side hanging over me. I attributed it to being overweight, short, and ugly. Today I recognise this as body dysmorphia. I pushed disability away. I tried so hard to feel ‘normal’. My childhood response was ‘ stage face’. Get on the stage, play the part you want to be and do not forget the lines. I never cast myself as the character with chronic pain, or suffering. I still have a collection of character faces to suit the occasion and to make others feel comfortable around me. To support the different characters, I introduce the support act, neurodiversity. It is an actor that refuses to learn the lines. Instead, it prefers to improvise through the performance! The play is the same, Dark versus Light, fourteen shows a week. As I research disability, I take a more active role in disability advocacy in my workplace. I share my experiences in an open arena. I am more comfortable letting others peek into the dark side. I am even content being me, warts, and all. But to keep control of the dark side, I need to wear multiple stage faces.

Seeing is believing.

If I cannot see my disabilities, how can other people? We do not know what we do not know. The discarded packets of medicines remind me daily and the limitations these conditions impose upon me. If I cannot see, it is understandable you cannot see them either or comprehend my battle. Of course, you can see the pills, the boxes of medication sat waiting, the walking aids, and the adapted desk. The dark side of disability is always there. You may not see all my daily challenges. The fatigue, operating on 3-hours sleep, opening the medicine packets, and trying to navigate zips and buttons. You do not see the nausea from popping pills. You do not see the unknown damage to internal organs and why should you? It is OK not to understand, and I do not expect others to get it either. I hope people realise that behind the visible physical disabilities, there is a darker side. It is a constant battle for supremacy over my being.