14/11/2020
I'm not autistic but I do have a story about a child whose parents didn't want her labelled as different. I grew up needing a lot of physiotherapy and medical intervention due to Cerebral Palsey. My parents followed all the rules, my case is mild, and due to my parents diligent following of The Rules as set down by my medical team - I can walk, I can talk, I can swear, I can do All The Things. Intense physiotherapy. No trampolines, not skateboarding, no skating. My legs and ankles wouldn't be able to handle them due to their weakness.
There was another child being cared for by the same doctors who refused to follow The Rules and wanted their kid to have a "normal" life. They didn't want her "labelled", completely dismissing the fact that a medical diagnosis can help kickstart your ability to get the proper support you need to have a quality of life, but only if parents follow through with that support.
Her parents wanted her to be a regular kid. They bought her a trampoline which her legs and ankles couldn't handle even through she was completely the same therapy regiment as me. The Rules decreased the risk of irreversible damage by removing exposure to activities that would increase our risk of an accident which could cause irreversible damage.
The medical team's goal was to help us to walk, however we were still going to have limitations, but said parents just wanted to see her smile. Predictably she had an accident on her first time on the trampoline which caused irreversible damage to. She needs a wheelchair permanently now.
Having to use a wheelchair for mobility isn't a horrible end-of-the-world event. Her life wasn't over but it's now increasingly difficult, because our society isn't set up for people with disabilities. People who didn't want to work with their child's differences, now have a child whose life has been made increasingly harder by a society ..who refuses to work with her differences.
The same applies for the autistic community, people with ADHD, and physical and mental disabilities. Wanting your kid to adhere to your version of "normal" negates their differences. It ignores their needs. It's not a noble idea, it's an ablest one.
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Transcript: Ana
I learnt I am autistic few months ago, got in touch with my parents about it and they said they've known since I was a kid when they got my tested. Didn't tell me so I could grow to be "normal"..
I was really hurt because I've spent almost 10 years of my life feeling out of place and different and suffer from depression and anxiety due to it. I'm now spending time at a workshop hosted by 2 amazing autistic women at my uni and rediscovering myself.
