In general I tend to be ambivalent about art or social commentary that singles out people with disabilities or differences. It isn’t easy to create a statement that doesn’t feel like pointing and staring. So when I saw the news story about a fashion photographer “reframing beauty” by photographing people with genetic disorders, I steeled myself for mixed emotions.
Then I read this quote:
“It’s terrifying,” Guidotti said, “There’s other ways to present this. I’ve spoken to so many genetic counselors who have a family in front of them and say ‘Ok, this is what your daughter is going to have. Read this.’ And they cover up the photograph because it will freak the family right out.. There’s gotta be something else we can do. There’s gotta be another way to present that information to that family.”
And I wanted to cry.
I didn’t have parents in mind when I originally created Fake Arm 101, but they are why I have kept it online nearly ten years after first writing it. I have gotten many, many emails from parents of young children who were born with one arm like I was. These parents tell me they didn’t know anyone with a limb deficiency before their child was born. They have no idea what a life looks like when you’re missing a limb from birth. Then they find my FAQ, and they probably cry.
The heartfelt emails of gratitude have always meant a lot to me, but now that I have a child myself, I get it. There is so much uncertainty in being a new parent. I can only imagine how much more intense that uncertainty feels when an unknown factor looms over your baby’s future. Anything I can do to calm a new parent’s anxiety, I am happy to do.
This is me. I’m pretty normal. :)
Please check out Positive Exposure. This is the kind of project that makes me feel like we’re getting beyond pointing and staring.
You can buy the zine version of Fake Arm 101 in my zine shop. This small DIY magazine is not at all the same as the online FAQ. It is a look at some of the comments I have gotten about my arm and some thoughts on what it is like to be physically different.