A friend of mine is upset. My friend is a blogger. She is a parent of two children with autism, amongst various other conditions. Today, my friend saw a link, posted on Facebook by a long-standing close friend of hers, pointing to an article, written by a disabled woman, about how parents and parent bloggers are often guilty of oversharing inappropriate details about their children online. This, fairly blatant public slating of my friend’s blogging about her children (and it isn’t the first time the so-called friend has mentioned it) has really stung, not only my friend, but some of us other ‘special needs parent bloggers’.
The writer of the post linked discusses that, although these parents mostly mean well, their writing about the details of their children’s conditions may well be detrimental in the child’s future. She discusses how she would like to see fewer stories about disabled people told by others, but rather the disabled people themselves should tell their own stories and decide what should and should not appear on the internet. She implies that we parents write too much about how our children are burdens, or inspirations, and that this makes her uncomfortable.
Of course, she does make a few valid points. Yes, it’s not a good idea to share absolutely everything about your children and the ins and outs of their conditions; some things do need to remain private – children deserve dignity like anyone else, especially if the child can be identified in any way by others that may know them, now and in the future. Yes, disabled people should be able to use their own voice to tell their own story in the way that they want others to perceive it. If they can. Yes, we need to be very careful about expressing negative feelings and experiences, particularly if other people relating to those can be identified. And yes, once out there on the world wide web, it’s there for all eternity and we must consider the repercussions of this as the child grows and develops their own identity.
However, for this writer to imply that parents should not be writing about their children until they’re of an age to be able to consent to it, denigrates my right as a parent of a disabled child to be a voice for her until such a time as she can advocate for herself.
This blog began the day after Tink was diagnosed with autism, when I was feeling confused, worried, doubtful, hopeful, and a multitude of other emotions. I wanted somewhere to let it all out. Surely, that’s my right? Just because it’s my daughter with the condition, it doesn’t make my emotions invalid. Yes, she is directly affected by it, but so am I. So is the rest of my family. And to suggest I can’t share that with the thousands of others out there in a similar boat is, frankly, short-sighted and rude.
If I had not started this blog, I wouldn’t have come into contact with many other parents all living a similar life, particularly other bloggers. I wouldn’t have made friends, both virtually and in ‘real’ life, with many other parents and with whom I can share experiences, concerns and good times. I wouldn’t have received the many messages via the blog and my Facebook page from other parents, thanking me for writing about sometimes difficult subjects that they thought they were alone in experiencing. I wouldn’t have been able to use my online presence to ask for advice from others, both for me and for those that message me asking if I know about this or that. If I hadn’t started this blog, I would most likely have bottled it all up and imploded.
As far as I am concerned, writing about my child is my prerogative. Obviously, I don’t use her real name, because I do use photographs of her. Yes, there are readers of my blog who know Tink in real life and know some of the other people mentioned in my blog, so I try to be careful about what I say. There are things I don’t talk about in great detail, because I know it’s inappropriate for whatever reason. I might mention that Tink has a meltdown, but I would never post a video of it as it’s not something I feel others need to see.
I write to share the ups and sometime downs of life with an autistic child. I do this because not enough people know about it. I write to change perceptions of autistic people; there’s simply not enough acceptance and we need to change society, because I sure as hell am not changing my child! I write to keep those that care about us updated about Tink’s progress (or not, as the case may be!). I write to share the funny things she does, the little things that amaze me or worry me. She’s
awesome ausome and I want the world to know!
At this present time, Tink is 4 years old. I can speak for her. I am her mother. I live her life with her every single day. As she grows older, and if this blog is still going, I hope she will contribute to it herself, with her own thoughts and opinions, or, even better, start one of her own. And if she decides she’d rather not discuss her life online for all to see, then that’s absolutely ok with me. But for now, I’ll keep on writing, advocating and sharing.
For anyone to tell me that I do not have a right to do that is denying my child the voice that they’re saying she should have!