I know my OI people are loving Wishbone Awareness Day all around the world. I know this because we have the Internet to keep us sharing every move we make in our lives. Isn’t that awesome?
I love seeing how people with my disability live their lives on a day-to-day basis. I look at my Facebook newsfeed to read about Scott Becker’s Ebay venture, Jessica Pelasky’s latest trip to Starbucks, or Jessica Wallace’s picture of the day. I know so many more people with Osteogenesis Imperfecta since the Internet started. It’s been a boon for all of us.
But can it be a curse as well?
Lately, parents with children who live with Osteogenesis Imperfecta write Facebook posts about their children that make me cringe. I know they don’t mean any harm but there may be some drawbacks to all of this sharing that they don’t realize.
This is my opinion and I don’t intend to represent the views of other people with Osteogenesis Imperfecta. However, I did speak to several other people with Osteogenesis Imperfecta about this to see if I was the only person who thought this way. I wasn’t. However, I’d love to read your thoughts on this subject so please comment at the end of the post.
Childhood Memories or Nightmares
I’m very glad that I wasn’t born in this era. I’d hate to know my mom was out there posting my every painful experience for the entire world to go “aww, poor thing.” We don’t want others to remember us that way.
In fact, we want to forget those times all together. We know we can’t but we don’t need the Internet to keep a record of it for us either. Think about how this will make your child feel 5, 10, or 15 years down the road.
Please don’t make us appear weaker than we really are in life. Post pictures of your child having fun after the cast is on or smiling after surgery. Don’t post x-ray photos or photos of the actual fracture or your child crying. Believe me, I can’t even watch a Steven Seagal movie without feeling the pain when he snaps someone’s bone.
Yes, I know your child is beautiful but when you show your child especially your toddler age daughter with nothing on but a diaper or shorts on the Internet, his/her every bone is seen without his/her permission.
Of course, some people will come to the defense about loving your body and how beautiful the human body is regardless of the OI. But how do you know your child is going to be ok with that in the future?
Is it too difficult to only share photos of your child with OI wearing clothes?
Can I be honest? I know my arms and legs are crooked. My back is crooked as well. I don’t wrap myself head to toe in clothing to hide it but I’m not out there exposing every personal defect. Some things should be kept discrete or until the child can decide if it’s something he/she wants to share with strangers.
When I’ve been to OIF conferences people spend hours discussing clothes that make their bodies look good. We don’t do it because we care what society thinks. We do it because it makes us feel good.
It’s long process to love our bodies as is. The people with OI aren’t the only ones that deal with body image issues. Everyone does. So can you please wait until your child is ready to decide he/she wants every surgical scar or dentistry operation shown to the world?
Empower and Protect Your Child
Share photos of your child that will make your child proud to see later on when he/she is an adult. Remember that photos on the Internet are there forever! As a matter of fact, if the Internet were to disappear, your photos would survive because someone likely saved your photos without your permission.
Protect your child with your photos. There are so many photos going around asking for “likes” for the poor pathetic deformed child. How do you know that child isn’t yours? I’ve already seen two incidents like that on Facebook.
Sharing is great. The Internet is great. But so is privacy and the choice to decide what we share and how much of it.
Please don’t portray your child as if the world should pity him/her. Today’s social media posts may be tomorrow’s headache for your child.
How do you feel about the way parents with OI children are sharing their child’s most painful and embarrassing moments for the world to see? How would you feel if your parents did this? Love to hear your comments
I also agree with what you posted in this article. I do feel the pain of those children every time I read about their stories though. Some of the pictures do get a little disturbing.
This is an issue that’s come up in discussion re: children with disabilities in general a great deal recently.
Some parent bloggers seem to manage balance whatever their need for blogging about their child is (whether it’s to get support from other bloggers, to act as support for others, to provide information, to be an advocate, etcetera) with privacy concerns for the child VERY well.
Others don’t do it so well. I think that learning to balance these things is a skill, and I wish that there were more resources for parent bloggers that could learn to help them to do it effectively, for the sake of the children involved, especially if pictures are being posted.
One of the issues as I see it is that the media doesn’t provide good examples of portraying the stories of disabled people with dignity. Here in Canada, a piece called “Forever Child” about a family’s struggle to get supports for their intellectually disabled son (an adult) appeared on a national news show…the segment showed a shot of him being dressed by a caregiver (including a shot of his adult Depends on the bathroom floor), and he was present for an interview with the mother about how difficult his disabilities made his life for her. That went out to the whole country. If he consented to being depicted with that level of indignity, I wonder if he truly understood the ramifications.
And isn’t what this issue with the social media comes down to? That even if these children say, “Okay, you can use me in your blog,” do they really understand that once something’s out on the Internet, you can’t get it back?
Great article. Very thought-provoking.
I think your article covers 2 slightly different yet similar thoughts. I agree with both of them. As far as sharing pictures of children, I think every parent with any child needs to be a little more selective with the pictures they post on social media sites. It is going to be a few years until we see the real effect childhood pictures on the internet have on them when they become adults applying for college, jobs, etc. As far as the stories that parents of OI children post on facebook, I think it’s good and bad. I have never been a fan of support groups and facebook has become a huge one for parents of OI kids. I don’t like most support groups because they often have that “feel sorry for me and what my child is going through” When I read a post that a parent puts on facebook, I can tell immediately if the parent themselves has of OI or not. OI is a very unique condition because we are often very stubborn and independent. We learn how to handle the pain and not let it get us down at a very young age. I am very worried about this age of helicopter and over protective parents with access to social media. They seem to look for sympathy for their child and themselves. Instead I wish they used social media more for ways to help the child handle pain, become even more independent, discuss procedures that make our bones stronger and overall share that despite the many broken bones we endure, life with OI is not that bad at all. Besides contact sports and running, what exactly can’t we do with just a little modification? For most of us, our life span is normal and their are MANY MANY conditions out there that are far worse. I’ll take OI any day over a condition that truly interferes with my daily life.
Perhaps it’s up to us to educate the parents since we are already adults and understand the ramifications and the limitations of our disability. I agree with your pity comment. We also have the parents that coddle their children so much that the child never really explores his/her abilities without fear of a fracture. While we all avoid pain, we don’t all avoid living life to the fullest.
Should we volunteer ourselves at the next OIF conference to help the parents?
Not to be rude to the parents but if parents are going to rely on the media for their choices then we are in deep trouble all over the world. I think parents should use common sense and ask themselves if they would like all of this exposure done to them.
I asked Amanda if we should volunteer at the next OIF conference but perhaps there is more we can do in the meantime. Do you have any suggestions? Thanks for your very thorough and thoughtful response. 😀
If they are disturbing to us, imagine how the kid will feel when he/she sees their agony on the Internet for the world to see.
That’s why I stay away from Steven Seagal movies. “crunch and crack”