Being an activist can be a thankless job. Sometimes it can feel like you’re doing a lot of work for very little return. Many activists spend hours upon hours, of their free time, pouring themselves into projects and passions for no money.
I fell into the life of an activist completely by accident, but I stayed in it because of passion I have for it.
A friend of mine had to write a paper, and decided that I should be the main subject. I wasn’t expecting anything to come of it, but I did ask for a copy.
During a clinic visit I happened to mention the paper to someone and they asked if they could read it. I’m sure more than just that one person read it because during the visit after a few people seemed to know about it.
I was asked to speak at the next conference, and that started it all.
I knew there wasn’t a lot of information out there about people like me for people like me but I was hoping someone had it.
In reality, no one has “it.”
People have pieces, but even when you put all the pieces together there’s not a whole picture.
For a disability that’s been around for centuries people, doctors included, are just getting to the point where adults with CP are being recognized.
We haven’t been able to get adequate medical care, even if we are disabled enough, because there are few medical studies for the demographic.
A few years ago, there were no studies, at least not reliable ones.
It’s just really slow.
There has been no one highlight of this journey because it seems like everything is a highlight in some respect. Although it can be a thankless job when the “thank you”s do come it’s pretty awesome, they make it all worth it.
It also helps to take the long view, seeing the good that’s done as a whole, rather than seeking out short term goals, getting what you want/need with little regard for the whole.
I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.