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