Parents: Please Think Before Sharing Sensitive Photos of Your Kids With Disabilities

The photo albums sit in a drawer in my office. Some of them depict a happy little girl playing with a ball, riding a horse, splashing in the pool with her mommy and daddy holding her. But mixed in with them are some not-so-happy ones. A little girl in a body cast, a blanket barely covering the cutout of her behind, and not hiding the white plaster immobilizing her legs. A little girl photographed by her own mother in a detached, clinical way to show how her body is misaligned due to cerebral palsy, her arms too stiff to reach above her head.

There are whole binders, too, of instructions for different physical therapy procedures, each illustrated with a photo of the girl’s body posed just as it is “supposed to be.” She has stopped smiling by now. There were videos, but those are lost somewhere in the basement of her childhood home. They show various exercises as her mother and physical therapist describe them, and she periodically interrupts to provide a mocking narration of the proceedings. The teen girl who hated her body and wore loose black t-shirts every day was forced to wear a bikini top and shorts, so those looking at the photos and videos later could see how to push and pull her into the “right” positions.

The little girl was me. And those photos are mine. Mine to keep or burn, mine to choose who can see them. Every time I look at many of them, I cry. I remember the pain after the surgery, but most of all I remember the itching under my cast, and how my parents held me as I screamed because I was so miserable. I remember the relentless physical therapy, the vain attempt to fix me long after I figured out that I wasn’t broken to begin with. I hate the photos of these moments, but I’m glad I have them. They’re a concrete reminder of what I experienced, validation of the depression and anger I struggled with as a teen and young adult, and context for understanding the body image issues I still live with today.

These photos are an important part of my story, but they’re also violating, invasive and deeply personal. So I don’t share them, except with a few very trusted people. But as I sit here, a woman with cerebral palsy moving into middle age, I realize that despite all I went through, I’m lucky. The Internet didn’t exist when I was a child, so those photos remain analog, safe from strangers’ eyes. Many younger people with disabilities aren’t so lucky.

I’ve seen so many parents sharing photos of their children’s surgical wounds, therapy sessions in which their child is clearly miserable, and even videos of meltdowns, toilet training problems, and worse. I want to ask them why. Why did you share that? Why did you think it was OK to share such an intimate, sensitive photo of your child without their consent? The Internet is forever, and those photos will haunt them long after their injuries have healed and their tears have dried. Yes, we live in a world where people overshare about the tiniest details of their lives, but there’s a difference between someone choosing to share the gory details of their own surgery or filming themselves at a difficult moment, and a parent doing the same.

Too often, parents share these types of photos not to help their child, but to make themselves feel better. It’s a way of saying look how hard things are for us, an appeal for sympathy. I understand it’s not easy to have a child with a disability; between the medical procedures and society’s prejudice, it can be overwhelming at times. Parents need support, and they need to talk to someone about what they’re going through and the images burned into their mind of their children in pain and struggling. There are places for that, forums where they can post semi-anonymously and the conversations can’t easily be linked to their child’s identity. But posting those images on social media, on a personal blog, or on a site with millions of viewers like The Mighty is harmful, and it can scar their child more permanently than any surgical procedure.

Not all parents share sensitive photos of their children with selfish intent. Sometimes they’re intending to show that a situation can be difficult at first, but things get better. Sometimes they’re trying to remove stigma by talking openly about issues. And on the one hand, they’re right. There is absolutely no shame in having surgeries, scars, or therapies. But graphic photos of a child’s heart surgery, videos of an autistic child crying or looking lost in therapy, and other intense images can bring back traumatic memories. If a mother took photos of her son’s stitched back after his spina bifida surgery, they may be important for her to keep and remember, but they are not hers to share. They are hers to show to her son so he can understand where he came from, and when he is old enough, he can decide whether or not he wants to share them with the world. It should be his right and his alone.

I understand making these kinds of decisions isn’t easy, and there are many gray areas. For example, if a child is injured and someone needs to be held accountable, sharing photos can put pressure on those responsible for seeing that justice is done. And I’m not suggesting that parents shouldn’t share any photos or only share happy moments. A non-graphic hospital photo of a child in bed resting, or getting gifts or a visit from family is OK. The picture of me above is one I feel comfortable sharing; although it brings back bad memories, it’s respectful of my body. I’m dressed as well as I can be under the circumstances, and I’m smiling. We shouldn’t have to censor our lives to make everyone in social media land think things are perfect. But there is a line between honesty and violating someone’s bodily integrity and privacy, and we should do our best to find it and honor it.

In our society we talk a lot about children with disabilities, and sometimes about elderly people with disabilities. Those of us in the middle, adults in our 20s, 30s, 40s, and 50s who’ve been disabled since childhood sometimes get forgotten. We go through a process of acceptance throughout our lives, trying to come to terms with what we went through as children. It can help us to have sensitive pictures, to understand where we came from and to consider how our parents felt and what they went through. But decisions about whether and when to share sensitive disability images should belong to the person in the photo, and them alone.

Please don’t share sensitive photos of your child with a disability. One day, your child will thank you.

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