In case you haven’t noticed, I am trying to be more stealth with using B-man’s real name (and face!) these days. I’m not quite used to this, as it feels really awkward, kind of like “Hi I’m Jenny but people call me J-Wow” awkward. I promise, I have at least a few good reasons for this change, and even a few more good reasons for the other changes to the site.
I noticed, with the help of some super-awesome bloggers, that everything I was doing was wrong.
Wait, wha? (Gimme a sec. I’m still picturing that scene from Jersey Shore.)
I used to have a page with no fewer than 3000 words (maybe more?) dedicated to explaining, in detail, his entire medical history. I included details of his oxygen and BiPAP settings, how many bones he’s broken, and the pièce de résistance: exactly which chromosomes are affected by his microdeletion. I’m surprised I didn’t draw a strand by strand caricature of his DNA.
I think the easiest explanation of why I did this was the need to PROVE to the world that 1) his condition is very, very super serious, and 2) that we have had a rough time as a family. I realize now that splattering his personal medical information on the internet isn’t the best idea. Anyone could Google his name and find out stuff about him, stuff that only our inner circle of friends, family, and doctors should know.
The issue of bloggers who are parents of disabled/medically fragile children “oversharing” is not a new one, but it came into my world just over a month ago. In a nutshell, the hashtag #crippingthemighty was created, and disabled bloggers started speaking out against the disability-themed site The Mighty. In addition to finding the high ratio of parents/advocates to actual disabled bloggers problematic, they pointed out many other ableist ideologies insidiously woven throughout its pages. (Full disclosure: I’ve written for them, and I still plan on submitting posts in the future, but that’s a whole entire post for another time). Some of these problems include: perpetuation of inspiration porn, not paying disabled writers, the use of ableist language, and parents framing their child’s disability/medical issues as a burden.
This last problem really hits me where it hurts. In previous posts, I have used negative language to describe aspects of Bucky’s condition, admittedly out of an initial desire to simply connect with others like me. I’ve complained about his leg braces and lengthy hospital appointments. I’ve demonstrated, repeatedly, an unhealthy level of resistance to accepting who he is.
I’m not sure how he’s going to interpret the things I’ve written about him in the past, but going forward, I will be making sure that everything I write is framed in at least a neutral light. I had underestimated the power of words. Suffers from, afflicted, painful, diseased, delayed. I’m not saying I will never use them again. I’m simply more respectful of their immense power when woven into a disability-related story.
Don’t get me wrong – it’s not all going to be sunshine and roses. I still plan to be honest. I still have many stories to tell. I just want my son to eventually read everything I’ve written and actually, you know, kind of like the stuff I’ve put out there.
I think it’s really important to listen to the disabled (adult) advocates who have come forward and criticized the way we (the parents) are writing. They are the ones currently identifying and confronting ableism, a role that my son will one day fulfill. I am thankful that they continue to write.
Here are some of my favourite #crippingthemighty posts, if you’re interested. (AND YOU SHOULD BE INTERESTED AND READ THESE OR ELSE I MIGHT NOT POST THAT CUTE VIDEO OF MY KID SINGING ‘HOTLINE BLING.’)