8:45pm July 16, 2014

➸ Complete Strangers Photoshop A Picture Of An Infant To Help A Grieving Dad

What started out as a simple favor, turned into a beautiful act of Internet kindness for one dad on Reddit. Nathen Steffel posted a photo of his infant daughter, Sophia, on the site with one request: “My daughter recently passed away after a long battle in the children’s hospital. Since she was in the hospital her whole life we never were able to get a photo without all her tubes. Can someone remove the tubes from this photo?”

I find this really disturbing, but I can’t figure out why. Do any of y’all know?

I do, but I’m afraid to say it for fear of offending people. People’s emotions get really tied up in things like this, and they never second-guess their prejudices, especially while mourning. And as someone going through the stages of grief right now (completely out of order, but going through them) I can see how any criticism or being disturbed by this could be seen as a threat in a way. All I can say is I don’t intend this tis way.

I have tubes.

I have a feeding tube – a permanently placed one on my abdomen. I have an oxygen cannula. I have a bipap machine. Sometimes I have IVs and PICC lines. These tubes are not bad. I love my tubes. I especially love my feeding tube. Not every tubie loves their tubes, but I love my feeding tube with a passion, it has made my life so much better than it was before it, I never want to not have it, it’s wonderful. A lot more people feel this about their tubes than you’d expect.

Anyway.

These tubes keep us alive. They are some of the most intimate forms of assistive technology. They make sure that we are here, for as long as we can possibly be here. Without my tubes I’d be dead.

I do think the father understands this a little. The article says:

Seeing his daughter without all of the equipment meant a great deal to him. “Although we cherish her real photos because that’s how she was,” he said.

And that’s the thing: That’s how she was.

And lots of parents of disabled children want to imagine a child without a disability. An imaginary child that will never exist. And those of us who have had to grow up alongside the ghost of such a child know how powerful such ghosts can be, how heartbreaking it can be to never be good enough as you are, to always need to be more normal than you can be.

This reminds me of parents who want to always photograph their children outside of their wheelchair, no matter how uncomfortable or even dangerous it is to set their child up on some other surface. There’s this desire to deny disability. Because as they see it, the “real child” is not disabled, the “real child” exists somewhere behind all the tubes and wheelchairs and communication devices, and they see this as getting a glimpse of the “real child”.

Those of us who have been there, been the actual real child, while people looked around for idealized images of us they could use to go into denial about disability for just an hour, just a few minutes… we know it hurts, we know it’s rejection. We know it’s “this is the child we wished we had, and you don’t measure up to her, and you never will”.

But nobody wants to hear all this, they want a heartwarming story, not someone pissing all over their parade with facts about disabled people. :-/