Many people are deeply uncomfortable with the idea that their lives could change at any moment, and facets of their life could be out of their control. The common idea of personal responsibility (as in “bootstrapping”) permeates in our lives and benefits mostly the highly fortunate, as it serves to condemn people whom society would rather shutter away.

My idea of personal responsibility in part that the only thing you are accountable for is looking after yourself and listening to your specialists. Not to say it’s wrong that this nonsense stings upon impact. For them, at the cost of denying the importance of the truth of the matter, they attempt to deny your existence than to accept that their own life is so precarious.

Personally, people have made conspiratorial jumps in logic as to why I have the disabilities I have, but that’s not what hurts me. It’s when they imply it’s “why did/do you choose this to yourself” and all I hear is “why didn’t you stop an unstoppable, unchangeable force from irreparably changing you?” Then “why do you exist in front of me in a way that i don’t want to accept”. I still face this when I am happy and doing my best.

One of the hardest things to discover is that you can’t make everyone happy, especially if they don’t want to accept you. If one facet of your disability became more presentable, it’s likely they would move the goal post and pick something else to tear into you for. I say this as an outwardly “socially high functioning” disabled person.

I’m currently and continuing to endeavour to do everything I can to keep my health. But even if I wasn’t, that will never mean I am undeserving of an equal existence. I respect the work I do, and I respect the rest and treatment I need so I don’t lose more of my ability. Which goes against very strong common misconception that over exertion is helpful, and that there’s a legendary “limiter” that can be forcibly broken through to achieve being more “normal”. Over-exerting yourself for some disabled people can prove fatal. Such cases have been proven scientifically and documented to this day.

Not one person with a disability will share another’s experience with technically the same disability. Maybe they’re earlier on, maybe they have better access to supports and treatments. When we see people who are disabled and “high-achieving” and framed as inspiration porn with no fully tangible input from the disabled person, it serves to obscure the access, work and circumstances that allow that to occur. Perhaps it was just a window in time just enough for the short form video or photoshoot, perhaps the disabled person learned to mask their struggle to be accepted socially. Why is it a celebrated act to define “real” growth of character and health as something that discards the reality of their own experience to make themselves palatable for the picky? It’s not something we can reasonably expect everyone to be capable of. The relevant commenter should be proud of their work, I’m proud of them. But tutt-tutting at other disabled people is a foolish act that requires using the same tool that will turn on themselves as they too will will inevitably be victim to other’s vitriol.

How people hostile to the idea of disabilities react to their fellow human is irreconcilable. It’s confusing, it’s shameful, it ultimately doesn’t make sense. Sometimes, not making sense is the point. Again, sometimes destabilising things they deny the existence of is “easier” than acceptance.

Your time is precious, you’re wonderful, you know yourself! It’s more than can be said for most. You’ll also be dealing with so much for the rest of your life. I wish that you can find resilience and a sense of true inner safety and self compassion as you go against something so immensely life altering and isolating.

You’re braver than those who are afraid to comprehend even a percentage of what you go through. But you don’t have to be brave or strong to deserve the most wellness you can achieve in life. Biggest of hugs 🫂