Kara Ayers
As an adult with Osteogenesis Imperfecta (OI), I love the opportunity that social networking affords me to connect with my community. I consider it a gift to welcome a new baby with OI through a flurry of photo comments and I’ve enjoyed witnessing the growth and maturity of a new generation.
As with any technology, social media also introduces a number of potentially negative, harmful, and controversial aspects into our lives. While we might share a genetic mutation or be the parent of a child with a genetic mutation, our community is diverse and feels very differently about almost everything.
This acceptance of differences doesn’t negate the importance of speaking up when you feel a photo, post, or message is harmful.
In the last few weeks, I’ve noted a strange trend of pictures that compelled me to voice opposition. At least two parents had posted graphic pictures of their children’s displaced fractures. One of these pictures was particularly disturbing. The child was in obvious agony, crying, and her leg was completely unsupported.
As someone who has experienced this type of fracture, the image triggered memories of actual pain that I could feel in my body. The moments before a broken bone is splinted or at least supported by something are saturated by a level of pain that’s difficult to describe and impossible to just imagine. Even if a photograph required a couple of seconds to snap, that’s 2 seconds longer than the child needed to suffer for the sake of an image.
Pictures like these are not isolated to the OI community. Friends with other disabilities share stories of graphic post-op pictures of children wearing little clothing and crying. Close-ups of feeding tubes on the chests of tween girls and videos of children resisting physical therapy are being posted by parents on a relatively frequent basis. The disability community at large must ask the question: What do parents of these images seek to gain?
Obviously, the children and thus their parents are in pain and struggling to cope. Many parents, me included, have felt supported by the advice and guidance of other parents’ perspectives in online groups. Perhaps these images are merely an extension of support seeking that crosses the line. The same advice or support, however, could be sought in a much less harmful way.
Regardless of the intent of these messages, their impact is clear. In discussing the reaction to these pictures with another adult with OI, she stated, “It was haunting. That image was the first thing I saw when I woke up the next day.” Despite the fact I removed the poster from my feed within seconds of seeing the picture, I was also bothered by its lasting impression in my mind. I can still see it.
Maybe we’re oversensitive-as suggested by some of the multiple private messages I received in response to my original post about this issue on my Facebook page. Or maybe, more likely, many adults with OI have legitimate traumatic memories and associated medical anxiety.
This doesn’t suggest that we’re all actively trying to forget or deny the painful parts of our childhood and these images make that more difficult. Instead, it relates to respecting the dignity and experience of a group of people that share a cultural experience. OI is part of my culture-the good and the bad. When we are in pain, whether or in the present or remembering the past, we feel vulnerable. It’s times of vulnerability that respecting one’s dignity and privacy is most important.
Besides the emotional toll of exploiting pain (whether intentionally or not), there are also basic online dangers to sharing these types of images. Shows like Tosh.0 and a number of websites scan the Internet for what they view as sensational graphic images. No one wants their child’s and their family’s horrible memory splashed on a website or a television show for other’s entertainment.
Undoubtedly these websites themselves are insidious but even liveleak.com provides a disclaimer to those that might be triggered, “If you get grossed out by broken bones, skip this.” Stella Young wrote a phenomenal post on inspiration porn this summer. She describes the “feel good” images of children with disabilities as objectifying and limiting to our range of experience as people with disabilities.
I consider this newest trend a polar opposite type of image but with a similar impact. Graphic medical images of nameless children splashed across the Internet are a form of desperation porn. Posters seek short-term gratification of crisis support needs with little thought as to the implications of these images on their child’s future.
As a parent, I’m fully aware that we all make mistakes. One or even several posts don’t begin to define the love of a parent. The effects and potential effects of these posts, however, are real and voicing concerns should be an option for those that are impacted.
Do you agree with Kara? Comment here to let us know. This is a topic that everyone is talking about in the community of physically disabled people.
Dr. Kara Ayers is a writer, professor, and therapist with a PhD in clinical psychology. She’s also a proud person with a disability. Kara has Osteogenesis Imperfecta, a form of dwarfism that causes brittle bones. She’s a passionate advocate for consideration of disability as a culture and has enjoyed online networking with and about the disability community for more than a decade. Kara’s clinical focus is on children and families and she cites her 2-year-old daughter as her greatest teacher. Feel free to contact Kara at writekara@gmail.com