Kara Ayers Desperation Porn

Desperation Porn: The Impact of Graphic Medical Images on the Disability Community

In Everyone has one, Opinion by Kara Ayers18 Comments

Photo of Kara Ayers

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

  • I applaud your stance on the rights of people with disabilities and the rights of children with disabilities who may be voiceless at this point in their lives. The descriptions you give of the pciture of a broken bone brought back chilling memories for me, as well, and I would NOT be supportive of a parent choosing to document the image rather than comfort the child in pain. I have always felt that people with disabilities are often looked at as “sideshow freaks” by others because of body disfigurement due to some disabilities but we, as a culture, should be embracing our differences and speaking out to let the public aware of our “normalcy” and put a stop to those who reinforce negative attitudes and perspectives of our lives. As far as desperation porn, I’m not familiar but it sounds like something I need to get on my soapbox about on my own blog! Thank you!

  • Erin reid

    I couldn’t agree more!

  • admin

    Thank you. 🙂

  • yogita

    I completely agree with you, Dr Kara. I have seen some morphed photos of children with disorders or disabilities & asked to click ‘Like’ for being inspirational or ‘1 click=1 prayer’ for them,.. Disgusting!!!

  • Alex

    I can’t imagine my mom watching me writhe and scream in pain while pulling out her camera ” look at the camera, sweetie. Mommy needs pity from the other parents!”
    As helpless as they may feel, those pictures are humiliating even as children. Doctors have taken many pictures of me completely naked and with the bedside manner of a robot. That’s bad enough.
    Speaking of Tosh.0, he showed (and, naturally, made fun of) this peculiar looking child scooting around in circles on his/ her kitchen floor (I don’t remember, I’d have to find it again) and I knew the kid had OI both from their looks and how they were scooting. He did one of those see how many jokes he can make in 30 seconds or whatever. Even though I chuckle and silently feel uncomfortable, it really does hurt. I just don’t want to be one of those disabled people who can’t make fun of themselves. It’s pretty much the only way to make people comfortable with it. I’m sure you have better ways because you’re super outgoing and intelligent, but that’s what I do.
    -Alex Mathews

  • Nathasha Alvarez

    Alex, wow! I never see that show. I’m glad I didn’t. Many people with disabilities say it’s ok to laugh at themselves. I think it depends on the joke and the one saying the joke. When I go to an OI conference, we joke around but we are comfortable because we are among our peers. But I wouldn’t like someone who isn’t disabled making fun of people with disabilities. It doesn’t mean I’m not comfortable in my skin, it means I have self respect. That’s my opinion.

  • Philip Marais

    I totally agree with you. Many parents who do not have OI have no idea what the pain and trauma does to you emotionally. My own mother only got a whiff when she broke her arm at age 65 and it has changed her perception for ever. The previous 180+ fractures I had were met with total incomprehension. That does not mean she doesn’t love me, it was just not part of her frame of reference.
    I also see my disability as part of my culture and my frame of reference. It influences my world view and it alienates you from friends and family who are not part of that culture, frame of reference or world view. You come across as over sensitive and weepy, a born sissy. Which is what I have been called by many.
    Well done for coming up for kids with OI.

  • Nathasha Alvarez

    While Kara is the one who wrote this article, Philip, you have made me realize even more how it important is for us to come to terms with our own pain and how it has shaped the way we think. Perhaps that’s why I am not always so sympathetic to people who cry about a tummy ache. Great! Another tidbit for me to chew on. Thanks.

  • Though I agree with you on the basis of graphic images as it has points in other direction but I can not agree with using “porn” in the title.. Porn is printed or visual material containing the explicit description or display of sexual organs or activity, intended to stimulate erotic rather than aesthetic or emotional feelings. I believe grabbing your readers on graphic images was your intentions. I am an advocate on pornography and it is a beast of its own and has absolutely nothing to do with porn, so my question to you is; Why did you choose the title?

  • My mistake…. I am an advocate on pornography and it is a beast of its own and has absolutely nothing to do with the word porn in your title.

  • Don Gardner Jr.

    Like Kara, I have Osteogenesis Imperfecta. In fact, I know this wonderful lady personally from our numerous discussions at OI conferences and through social media.

    She has demonstrated here a great insight because she can see where this practice can lead. Indeed, it can become a form of pornography to feed the appetites of those who hunger for yet another level of sensationalism.

    I don’t want people exploiting images of me in pain across the Internet. Such a practice is really is not much different from the practice of putting people with disabilities on display as a “freak show.”

    I applaud Kara for speaking out on this topic and opening our eyes to the problems which can occur from sharing these personal and painful images.

  • Nathasha Alvarez

    I agree with you, Don. 🙂

  • Teryl

    I fully agree on some photos. Some are pretty extreme! I am OK with ones parents post in a private site asking for ideas on hoe to splint. I have never posted a photo of my child in severe pain because the camera is the last thing I am thinking of. Usually I am busy shutting out the world. I agree I posted one last night of a fracture that was stable, did not need casted (you know how OI is), and was not graphic. As a parent I always ask my kid if I CAN post her photo. If she says no, I do not post. I think it is important to involve the child when they are old enough to give an opinion. If they are not old enough, use common sense.

  • Teryl

    By the way… I do not see it as a form of “porn” but do see some parents in the “one up” competition almost saying “my kid fractured worse than your kid and here’s proof”. I see the same with the competition to have the most surgeries, or go to the most prestigious hospitals. It is almost akin to Munchausen’s by proxy in my view. The child’s fractures are the parents pride and identity. Look at me for caring for this pitiful child. When a parent posts “my child broke please pray” not a problem. When they post a photo of the child with their cast or splint, no problem. But there truly is a line

  • Christina

    Great job, Kara! I feel the same way as you. As a parent with OI who also a daughter with OI and other disabilities it has been emotionally challenging to witness my daughter in pain. It is wonderful that we have social networking sites where we can seek advice from others and talk to people like us who “get it.” However, I think there is a line on what is appropriate and not appropriate to publicly post online. I never realized how much my daughters medical appointments, breaks and pain were going to effect me. I had no idea how much trama I had as a child with a disability until my daughter was born. It took me about a year to literally get through a doctors visit without anxiety. It just freaked me out! As a parent I am super cautious and protective of everything a doctor says and does during my daughters visits.

    I also agree with Teryl. Sometimes it does feel like parents, especially without OI, are trying to “one up” another parent based on their child’s horrendous fracture.

  • Casey Strother

    Love the article, Kara. Great job as always. I have never posted pictures of any of Lillian’s fractures. If I need advice I private message and it is only x rays. Like others have said, I could never imagine having my daughter screaming in pain and then me running to get the camera or cell phone to snap photos and then putting photos online. I have OI as well and if my parents ever took my photo while in pain and put it online I would have been very upset. I am guilty, though, of posting victory videos. Lillian reaching milestone in PT or at home I tend to post but that is because I am so excited to share her success. When Lillian is older I do plan on asking before posting any pictures of her. There was a photo posted recently, a really bad fracture, that made me cringe and gave me phantom pains (both the photo and the x ray made me cringe) and it did make me wonder why people would want to share that with people.

  • So glad to see the many comments on this post. It’s an issue that hits home with me-and many others. I thought I might address a few comments I’ve missed:
    @Elegant Dreams: It’s funny you bring up the title because when this article resurfaced last week (related to one of these images), a few people could not move past the title. Many definitions of “porn” describe it as a form of media intended to fulfill a desire. It’s my stance that these images are just that-an expression of an intense desire for support and attention. There’s nothing wrong with communicating and even outright asking for support-but it’s this method that I have a problem with. In a literary (writing) sense, porn is not restricted to a sexual definition. I chose this term because it relates to the more commonly discussed (in disability lit) inspiration porn.

    @Teryl and @Christina I also see the “one up” dynamic. It’s really encouraging to me that so many parents-like both of you-empower their kids with OI and allow them the final say in what images are shared.

    @Casey-During the most recent discussion about these images, it felt like to me that many people defending the practice don’t truly get the difference between these phantom pains that we have (due to actually experiencing comparable fractures in our own lives) versus just a general feeling of “yuck!” that maybe any kind/compassionate person would have when they see these images. There is a difference…..That’s not just my opinion but well-documented in nearly everything you read about re-experiencing trauma. I’ve been really disappointed in many people in our OI community who seem to invalidate our own histories of trauma-while at the same time paving their children’s re-experiencing someday by scattering images of their pain.

  • Annessa

    As a newly retired English teacher, as well as a person who has OI (Type IV; my mother had it, too), I fully agree with everything you wrote, Kara. Although I am not a parent myself, I have witnessed over the years, both in my job with the public school system as well as just as an observer with OI, that while some parents truly want what is best for their kids and seek to minimize their pain and discomfort, sadly, there are others who really do seem to enjoy the sympathy that comes with having an ill or disabled child. I once encountered a parent who forced her cancer-stricken daughter to go places without her custom made wig because she liked the fact that her daughter’s baldness made her the mom whose kid had cancer! Like Teryl, I see some of these actions as being similar to Munchausen’s by Proxy. Yet, there is another issue with these pics that no one has mentioned so far – and that’s the fact that these images, once they are posted anywhere, exist online forever, and the child in question is permanently robbed of their dignity by being photographed in this way. Even if the parent deletes these photos at a later date, the images can still be out there, lurking in cyberspace, for decades. Whack-jobs who “get off” on these images (and, yes, those people do exist) only need to right-click on an image to save it permanently in their hard drive without the parent ever knowing it happened. These pics can also end up on websites and TV shows aimed at mocking these pics, as Kara mentioned, but more importantly, the child depicted in the photo will one day grow up and may likely come across their own, horrific fracture photo in their own innocent web search. I wonder if these parents have given any thought to how their own child will feel, years later, knowing that they were exploited for sympathy by the very people who are supposed to protect them from harm.