The way my body is “functioning” right now is up at 4AM, breakfast at 5 or 6, then my body crashes and I have to go back to bed until somewhere between 10 and 1. Then up for lunch, if I don’t skip it, and a drive (if I can), and whatever errands I have to run (tomorrow will be busy, for example) or shopping or whatever. Then my body either crashes again, or I’m able to stay up and make or buy dinner. I wash the dishes and my body is always done after that. I have a hard time sitting upright without above-average support. I also spend way more time in the restroom than the average person, which is today’s TMI. And at some point, I play Pokemon GO, take a shower or two, and socialize online, depending on my plans and abilities. This may sound like a schedule, but it could be completely different tomorrow or a week or a month from now.
Some people with disabilities can operate by a schedule. Some cannot. I am at the mercy of my conditions every minute of every day. I don’t get to do what I want when I want. I do what I can when I can. There’s a difference.
Plain living is exhausting and unpredictable. It’s not a fluke or a bad day; it’s my default state. Still, I keep trying, and insist that there is something I can offer the world, even if it is not the world of average human normalcy.
There is a lot of debate on social media about what to call the disability community. Disabled people. People with disabilities. I accept either one. I don’t expect the general public to magically know all of the right things to say and do; that’s what communication is for. “Ask and you shall receive,” if a cliche line helps.
But what everyone can know, without questioning, with full acknowledgement and respect, is that my world exists, and it matters, too.
