Dear Previous Jess. Without you, I’m nothing.

Dear Previous Jess. Without you, I’m nothing.

 

I recently got my mother to send me some photos that my father took of me while in hospital for surgery at 13. I was going to share them with a small group of friends at a birthday party that had a slide party theme. Everyone was invited to share a collection of photos with a theme of their choice. I had always hated and been ashamed of those photos as a teen and young adult. At 34 I was ready to see the value and potential for brilliant story telling that was implicit in each of the hospital photos.

 

This is how it should be for all children and young people who have experienced medically invasive experiences and chronic illnesses. The other day I read a story from The Daily Mail of a mother who wrote about organizing her Autistic sons first sexual experience. The young man’s voice was not given space to speak. It was his mother telling a story that she really had no business sharing. It made me feel sick with sympathy for the son who should have been given more dignity and consideration that he received, especially from someone who was meant to love and respect him the most. I have many brilliant friends involved in and trail blazing the disability rights activism and they talk about this in great detail. I hope they keep it up because there are a great many people who need to understand the importance of the term ‘’Nothing about us. Without us.’’ A phrase used by the disability activists for many many years.

It is a mantra that basically means if you are telling a person’s story, a person with a particular medical condition or disability and you are not someone with direct experience, it is probably best to consult people with first hand experience and perhaps pay them to tell their story if they want. You will get a much better story. Something too good to be published in The Daily Mail.

A friend on facebook recently showed a photo of her six year old son getting air lifted into a helicopter to be taken to a big city hospital as he was experiencing some problems. I saw the look on that child’s face and nearly started to cry. He looked so scared. I understand that parents get worried and scared about their children and perhaps social media is a way of getting some much needed support. Even if that child’s parent had asked permission from the child, it makes me uncomfortable. Your child loves you and wants to please you. They are not able to give informed consent, that is why schools have permission slips that go to the child’s guardian.

I just feel like perhaps there are ways of getting that support that do not include betraying the privacy of the child. This child is not going to have the experience that I did. The experience of growing up and kicking ass at life and then coming to their own conclusions and decisions as to whether they want to share these certain experiences with others.

I am so grateful that my parents did document that particular time. I am grateful that they kept them private and always asked me first before getting them out to show people. I must confess that I never allowed them to be taken out to show people. To have that autonomy over my own experiences  didn’t seem like a big deal back then. Now, though with the internet and growing numbers of parents showing their children’s development and mishaps online, I am filled with relieved gratitude.

 

Perhaps this wont be an issue for the next generation. Perhaps they will take growing up being documented on social media in their stride. All of my dismay and proverbial pearl clutching over children’s private experiences being kept private until they choose otherwise will seem antiquated and lame to the next wave of humanity.