Parents of Children with Disabilities Online

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.

  

6 thoughts on “Parents of Children with Disabilities Online

  1. Couldn’t agree more! They cannot fluky consent,nor understand the repercussions of such posts, so it’s unfair to make it I to a form of entertainment
    In addition, it can often, glamorise and sweeten complex and damaging conditions.
    Beautifully written as always.

  2. Thank you for this .. your wise words have made me think deeply about what I write, and make me reconsider what I am putting online about my adult daughter without her knowledge. You say you want to be your own publicity officer (I really like your phrase), and it makes me wonder how much Nicole might be offended or angry about what I have written without her consent. I know she has a blog (which I don’t want to find), so maybe it would be better if I let her speak for herself. I am seriously thinking about taking my site down, not just because of what you said, but to be more fair to her.

    • I’m so glad we’ve had time to chat and have seen your decision to finish blogging. I support you in your blogging adventures elsewhere and am so glad that such a positive thing has come out of this controversial blog!

  3. This certainly didn’t offend me, although I’m not a parent. I’m an Aspie who spent four years in a boarding school as a child, so I tend to have strong opinions about this issue. I’m too old to have had material published about me in a blog by my parents, but I’ve seen parents share details about their children’s meltdowns and challenging behaviour, as well as intimate details about their digestive systems, periods and so on. These parents should be given a firm warning to stop. This is one reason (ostensibly) why some psychiatric wards don’t allow mobile phones and why most ban patients from photographing other patients (of course, it stops patients exposing abuse as well).

    The lady you tweeted last night told me personally that she used to be close to a blogger whose daughter has the same condition as my friend, and she got quite angry when told she was over-exhibiting her daughter. Apparently she’s a parent and my friend isn’t, and she has no right to tell her what to do.

    I know some parents who have to be their children’s voice, because their learning disabilities mean they cannot speak for themselves, and who have to fight to get services and to get them out of units, bad care homes and the like. However, others aren’t heroic in any sense and have made bad decisions that have had far-reaching consequences (particularly about schooling and residential care). These parents often have friends and professionals who back them up and none of them will accept that they did anything wrong or did less than their best. They also will claim that having to make such decisions is more stressful than having to live with the consequences of them. I could probably write a whole entry about this myself, but it certainly would offend people.

    • I agree. All parents are doing what they think is best, but some fall fowl to the fact that their children will one day grow up and have the chance to view these things. In a way I find parents of children who will never be able to do this more understandable. When a child has a severe learning disability or such they won’t ever be able to give consent so it is up to the parent to make the decision. The child’s condition also might be less likely to change and worries about future employers etc are less of a problem. I have had an ear bashing from one parent, but 100% of the responses I’ve received from disabled people themselves have been positive so I’m more than happy! 😅

  4. Pingback: time to end the blog? | Bipolar Dad, Bipolar Daughter

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