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Ableism and Hidden Disabilities

Trigger Warning: Ableism, Disability and Discrimination.

Ableism is a term that I have become familiar with over the years. Since becoming bed-bound and learning more about my broken brain and nervous system it’s been hard to ignore, confront and live with.

I was a go-getter. From a young age all I wanted to do was create things, whether it was images on photoshop, writing poetry or producing photographs with disposable cameras. Introvert granted, but I used my creativity to share my world. When I joined the working world as a teenager I worked non-stop because the idea of going without was a cycle I wanted to end. I continued to work and even though I was burnt out at times I continued to test the signs. I then quit my job and traveled solo around the world and hiked mountains, camped out at airports, traveled from hostel to hostel. The adventurous side of me was alive and it was a world I welcomed, a very privileged one.

When my body shut down and I could not move that life had ended. I was told my life was not worth living, I would not be a worthy member of society, the part of Shehla that was accepted was no longer of value and goodbye future bucket list and dreams. It took me around a year to accept and re-learn the simple virtues of life. Like walking in a straight line, making it up the stairs, and being able to feed myself again. Those things became luxuries to me. I’d try to take part in activities to see how much it would impact my body. How do you start a conversation about conditions that harm you but the rest of the world cannot always see. I’d often demonstrate to people how my symptoms would occur, but it was draining.

In a world where accessibility is discussed now and again but not always taken seriously it can become demoralising. I spoke to someone about lights flickering heavily at an event and was basically laughed at. I explained that the lights were triggering my spasms and could cause a non-epileptic seizure and was told well not much we can do. There was a dismissive tone, the whole you’re just whining for no reason. It made me think, will it always be like this? Will I raise a concern and be shut down because I didn't look sick enough.

I am still learning everyday and have had to bring my hobbies indoors, like photography, stargazing with my telescope at home, skin care and experimenting with make-up from my bed, reading and just breathing. I hope that I can continue to raise awareness.

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