This is one of those posts that’s going to reaffirm some people’s opinion of me as “bitter”. I’m okay with that, because I’d be lying if I said there wasn’t at least a tinge of bitterness behind this writing.
Yesterday, I saw on the news a story of an “inspiring” little boy who has osteogenesis imperfecta, same as I do. Of course, there’s a 30 year age difference, so he’s much cuter than I am. Although the story focuses mostly on his “good attitude”, and how he overcomes the obstacles placed in his path, it was really a white noise story to hype his mother’s book and the fundraiser his family is hosting to get money for wheelchairs, etc.
Here comes the bitter.
When I was growing up, my parents never held fundraisers to pay my medical expenses. Admittedly, I don’t know the whole story of their family, or if they have access to extended family who can help out, like I did. A stay-at-home parent was not a luxury I was afforded. Both of my parents have worked full-time my entire life. My mom didn’t write a memoir; she went back to school to get her master’s degree.
And though I didn’t always recognize it in the moment, my sister and I both always got what we needed.
Between GoFundMe, IndieGogo, Kickstarter, and the like, today, people think it is acceptable to ask perfect strangers to donate to whatever cause or venture they can come up with.
I’m not saying this is bad. It’s a boon for small businesses who might never find investors or funding otherwise. It’s a Godsend when disaster strikes – in the form of a storm, an accident, a sudden illness – when large amounts of money are needed in a short amount of time. And it’s a great way for fans to get involved in production on passion projects that can’t find an outlet via traditional means.
Yes, I have donated to these types of funds, and yes, I’ve considered using them for my own purposes. But never for things I consider everyday expenses. And, as parents of a child with OI, medical bills, wheelchairs, and wheelchair maintenance are most definitely everyday expenses.
Here’s the ugly truth: I’m not nearly inspiring enough. I don’t have a plucky attitude; I have a bad attitude. I’m not an optimist. I am cynical, and rarely see the best in people’s motives. And, even when I was only 5, walking on my own wasn’t my number one priority.
That’s the big seller when it comes to this news story. Because anyone who doesn’t use a wheelchair doesn’t understand motivation beyond getting out of that chair. That would be their number one priority, so why shouldn’t it be anyone’s?
I have never striven to be inspiring, nor to be a role model. What I have striven to be is a voice that cuts through the white noise, and brings attention to that which most people would like to ignore.
Unfortunately, few people want to see news stories like that. It leaves a bitter taste in their mouths.