This view is not going to be a popular one, but I feel the need to say it. I have had many conversations with other disabled people, many of whom agree with me. We need to talk about parents of disabled children’s online presence.
I don’t want to stand on anyone’s toes here, I don’t have children and nor do I have a disabled child, but I am an ex child with a disability. I get concerned when children are being posted about, paticularly when they are too young to know what is shared and who is seeing it. There are cases where I know children will never be aware of this, even as adults, but I worry there may be children who grow up to read the woes of their parent online which could be damaging to all parties involved.
Many parents say they just want their children to be like any other, mainstream and accepted. But most able bodied children don’t have a blog for every visit they make to the doctors and a vlog for every action they make. I can’t help but feel that the image of ‘special’ children is being perpetuated here. It isn’t harmful to the audience it is intended for because if we look at it closely the audience is parents of disabled children. Not disabled people as a whole. I understand there needs to be networks and forums for parents to share on, but with these stories going more and more mainstream it is causing problems for the disabled adult world.
If you were new to this online world you would be forgiven for thinking that all children with disabilities are trapped in a timeless bubble. They don’t age and competency never arises- everything they do is amazing because of the way they are. I feel so angry at parents who gush on Facebook about how amazing their disabled child is, because there is a shadow to the words. Despite. This has been achieved despite their disability. This implies that disability= none achieving and anyone who does achieve is seen as an exception.
The nature of the posts alone, being by someone other than a disabled person, perpetuates the image that disabled people do not have a voice and cannot speak for themselves. There are so many disabled bloggers out there but most of the posts that hit the highest view counts are from parents.
Many parents share their stories to ‘raise awareness’. Though this is an admirable cause it could also backfire when your child grows up and tells you they didn’t actually want to be the poster girl of a national charity or have a charity started in their name. Personally I would be mortified if my parents had done this. How many more donations would the major charities supporting disabled children have if there were less small charities run by parents, each with very similar mission statements but in different children’s names? There are good causes and there are, of course, previously unnoticed needs for charitable support. But if you are fighting for the same thing- why don’t you work together?
When I was fourteen I started blogging. I knew what I was doing and was aware of what I was posting and its potential consequences. I try to raise awareness of my conditions whilst, perhaps selfishly, using blogging as a way of therapeutically talking about the problems I have. But I am talking about myself and I write every word myself. I am my own publicity officer and I choose how to present my client.
I want to hear from other disabled people like me; I want to hear their voices and make others listen too. I want disabled children to know that people will listen to their voice when they grow up. That parents are brilliant allies but they also always have the network of people who share their disability. I want parents to have a network to share on and receive support without having to share with people who just think disabled kids are cute.
Allies are an important part of any community. They are the people who are not part of the minority but, because they are members of the majority and with the way things are at the moment, they get listened to more. True allies are brilliant because they point and say “listen to them” and people do.
I just want everyone’s voices to be heard and no one to feel misrepresented. We all need space to express ourselves.