Hey! Here in the back. ScarJo here. I’m FED UP with the lack of respect, okay?
Look, I’m a long, faintly pink line that starts just the above the shoulder blades and ends above the ass-crack. Yeah I’m real sorry about offending your delicate sensibilities. I moved in when my landlady was about 13 and had had a spinal fusion cause her scoliosis was out. of. control. Whereas I held things together.
I was a lot more colorful in those days. A lot more sensitive. Cut nerves I can handle though. But I’m supposed to accept I’m shameful? I’m not exactly blaming my landlady, who was a teenager at the time, for trying to find bathing suits and a prom dress that would hide as much of me as possible. She was a new driver still looking for an unmarked exit off the Bullshit Highway.
“Would you prefer unblemished and dead?”
Remember, all I am is a pink line, with the tiniest smidge of a ridge, on a person’s back. We’re not talking about a sucking chest wound. Or pus. Or whatever’s wrong with Steve Bannon’s complexion. I’m not asking to be a big deal, I’m not asking for attention, for cripes sakes. It’d just be nice to get out and get some freaking fresh air once in a while, you know?
But nooooooo, I’m a SCAR and I must be hidden. Continue reading →
If these were MDA cookies, they’d say, “I’m half a person,” and “I wish I weren’t me.”
I’m FEDUP with the Muscular Dystrophy Association’s (MDA) Telethon. Unlike other disability groups, it’s still teaching children with neuromuscular diseases (NMDs) that their role in fundraising is to perform their disabilities and/or be treated as passive props in an ableist play. There are better ways to involve all children. Example: The Girl Scouts’ cookie sales.
5. Selling cookies is an age-appropriate fundraising activity, just as it was for me as an 8 year old Girl Scout. Versus MDA putting even younger children on television to have their medical status be talked about and possibly misrepresented.
4. A cookie in hand is better than (more than) two decades of promises of cures in the indeterminate future.
3. Girl Scouts tell people that cookie sales help girls go on camping trips that are about having fun with all different sorts of peers. MDA presents their camp as one week of certain children finally being with their own kind after 51 other weeks of a wretched existence and no future.
2. Being a Girl Scout made me feel like I belonged with girls who weren’t necessarily like me – a girl in a Milwaukee back-brace who couldn’t walk much – whether it was by sharing the cookie sales or camping together.
1. Girl Scouts don’t say, “Please buy some cookies because being a girl makes me half a person,” or “Buy my cookies or I might die.” Continue reading →
I’m FEDup with people saying they can’t adjust to wearing masks even though they help protect lives during a pandemic.
If you have access to a mask but won’t wear it, take a #CripTip: Shift your narrative from, “I CAN’T ADJUST!” to “I will adjust and it will take time.”
I get it. Masks feel strange and uncomfortable. But unless you’re one of the relatively few who truly cannot physically tolerate wearing a mask, face shield, or other face covering, it’s not about whether you can. It’s about whether you want to.
Since you presumably want to save lives during a pandemic, the first step is dealing with what you’re telling yourself about wearing a mask and then, as needed, unpacking that typically messy box where emotions and physical feelings are stored in a jumble.
Note: I’m not addressing this to the, “But I shouldn’t HAVE to wear a mask and I won’t!” crowd. I have many skills but Fixing Selfish Magical Thinking isn’t one of them.
Photo credit: Christopher Egusa
Continue reading →
I’m FEDup with “debates” about my sexuality, my reproductive choices, my existence. There is so much to love about social media and one of those reasons is the experience of going on Twitter to
quickly check my popularity see what I can do to better the world and finding an objective discussion underway regarding whether someone like me should be “allowed” to reproduce. The person who asked the question may not even understand that, by placing my reproductive choices and existence within the frame of public approval, they’ve reinforced bias against me, a woman with a congenital disability who lives “like that.” Check out another guy who asks rational questions just like you did.
I’m not answering on Twitter because — unlike when I was in my 20s, 30s, 40’s — I no longer feel required to justify my existence just because somebody decided to have an “objective” “discussion” about whether I’m really worth the hassle.
Yup, even when your purpose is ostensibly positive, how you frame the conversation matters. Growing up with muscular dystrophy means I’ve heard more times than you can imagine that my particular disability places me — of course! — on The List of Lives That Suck. What’s newer or less personal to you is very different to me as a woman with a congenital disability. So here’s an excerpt from a longer past post that elucidates where I’m coming from. Continue reading →