The Hashtag

Last night I tweeted: ‘Right — I am abandoning my domestic duties and going to Writers Group. It’s time to hone my fiction writing again. No one believes me when I tell the truth, so I’m going back to making shit up! Really #wouldntchangeathing.’

What prompted this Twitter tantrum was a debate in one of the Facebook groups I belong to about the use of the hashtag Wouldn’t Change A Thing (and the campaign around it).

Now, before I go any further I wish to point out that none of what follows is intended as a criticism of the OP or any individual commenter involved.

#wouldntchangeathing is a hashtag I sometimes use myself. When I do so it is in the context of not wishing to change a single thing about my own son, or my own life and the choices I have made. When I blog, or post a picture using this or any other hashtag, I speak only for myself. I cannot speak for anyone else. Of course, I would like to change society’s perceptions of, and attitudes to, Down’s Syndrome. And, of course, I do my utmost to help my son to learn and develop, and be the best and most able version of himself that he can be. But of my own life, no, I really wouldn’t change a thing.

However, I DO understand why some people don’t like this hashtag and don’t want to use it. Fair enough. Their circumstances and experiences are probably quite different to mine, and so their perceptions and attitudes are bound to be different. They are not wrong, I am not wrong. We’re different, that’s all. And there are different ways to interpret the word ‘change’. Do we ‘change’ a person when we educate them, or when we alleviate distressing medical conditions? This point is open to debate.

Reading the comments gave me ample food for thought. Some interesting points were raised. On the whole the debate was conducted in a thoughtful and respectful manner. However, there were one or two things that irked me about it.

The first was the suggestion that because not everyone agreed with the hashtag it should not be used by anyone; it, and the campaign, should not exist, because it ‘does not speak for the Down’s Syndrome community’ and is, therefore, misleading. Well, excuse me — I and my family are members of the Down’s Syndrome community and it speaks for us. And judging by some of the comments, it speaks for others, too. Are we to be excluded from the picture just because our experiences do not reflect those of some others?

There are bound to be occasions on which some of us will feel excluded from experiences that are shared by others in our community, simply because all of our circumstances and experiences are unique and different. Whenever I see posts about how someone else’s child is ‘nailing it in mainstream’ I feel excluded. I sometimes wish these parents wouldn’t make it sound quite so much like a child’s worth and value rests on their ability to be so close to ‘typical’. My child is not, and never will be, able to manage in mainstream. He is far from being a typical nine-year-old, but he is no less worthy, has no less value, than their child. But I would never dream of telling any of these parents to shut up, or that they shouldn’t be posting such things, because I know that, in a world where the prevailing narrative surrounding Down’s syndrome is biased towards the negative, it is very important that these stories are heard, loud and clear, even if they do not reflect my own experiences.

For those who do not wish to use #wouldntchangeathing there are other hashtags and other campaigns to which they can add their voices.

The second thing that gave me the pip, I mean REALLY gave me the pip, was the implication that those of us who do use the hashtag, who do support the campaign, are less than truthful about our lives; that we wear ‘rose-tinted spectacles’ or are even ‘delusional’.

These comments weren’t aimed directly at me, or at any other individual, but my immediate reaction was: ‘How dare they, how ****ing DARE they accuse someone they’ve never met, whose circumstances they know nothing about, of being delusional about their own life, of being, basically, liars? Who the hell do they think they are to make such pronouncements on the lives and moral characters of people they don’t actually know?

When I read a post in which someone talks openly about how they are struggling with something, about how hard their lives are, or some aspects of it are, I do not doubt their honesty. I don’t assume they are being untruthful, that they are viewing the world through ‘shit-tinted spectacles’ or suffering ‘delusions of pessimism’, or that they are exaggerating for sympathy. I accept that their circumstances are very different to mine, and that they are telling the truth as it is for them. I certainly would not snottily say to them: ‘I prefer to show a more balanced picture.’

Because, you know what? There is no one family among us who can offer a truly balanced picture all by themselves. There is no single one of us who offers a complete representation of what life with Down’s Syndrome is really like. We are all just small parts of the bigger picture; and without each and every one of us, and all our differing experiences and perceptions, the picture would be incomplete.

One commenter came up with a great hashtag that encompassed the one thing that all of us involved in the debate had in common. It was #happylovedwanted. We all love our children very much, we all want our children in our lives, and we all strive to give them the happiest life we can. I salute that person now.

 

 

6 thoughts on “The Hashtag

  1. baxterluke

    Great post Kerry, wise words as ever. I have to admit that hash tag (like so many others) had passed me by. It does seem somewhat ironic attempting to impose homogeneity onto the “Down’s Syndrome Community”. If we stand for anything, surely we stand in honouring diversity. I know what you mean about that feeling of exclusion. I try to share all the stories of people with Down’s Syndrome achieving great things but I do have to repress the narky, grumbling little voice inside thinking “Sod you, my little girl is never going to be a model, a ballet dancer or nowt, I just wish she could walk!” But #wouldntchangeathing – well other than the brain damage, epilepsy, heart ops…

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    1. kerryfender Post author

      Thank you, Luke.
      I find it a really difficult balancing act, pitching a positive post sensitively between wanting to raise awareness of the positives among people outside of our community, and not wanting to cause hurt or distress to anyone within it whose circumstances are more difficult. I can completely understand why some people would change many aspects of their child’s life if they could, and don’t feel that this campaign/hashtag is appropriate for them.
      But I really don’t like being told that my experiences aren’t valid or aren’t truthful, and shouldn’t be heard. It’s ironic , as you say, that those complaining about being excluded, seek to exclude others by trying to stop them from sharing their side of the story

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  2. Les JOHNSTONE

    Great piece as always. I’m so glad in a lot of ways we never had social media when Bruce was a bairn. In my opinion it has allowed some to see any post as a challenge to their sensibilities. If someone has commented about something that doesn’t fit their personal narrative they just have to involve themselves like some nosey nelly. When Bruce was growing up we could only measure his development against his peers when they all got together, school, after school clubs, or parties. But the face to face reaction of parents was always pleasant, encouraging, supportive and accepting of the varied achievement of each others child. What got said away from that environment we cared not a jot. We have acquaintances and friends from Bruce’s peer group that have taken very different but equally important decisions on the path of their children going forward into now adulthood and it has been right for their child. Social media has changed all that. The Internet has become a world wide battle ground as people can sling insults and barbs without fear of the consequence or concerns for the hurt it causes.
    It, conversely, is a great place for enabling groups of people like those of us with common interests due to the extra chromosome to share this experience no matter how it affects the lives of those we love. Berating a choice of hashtag may momentarily distract from the struggles or joys we experience but surely the important thing is we share an experience which is uniquely given us through our children. It pains me when I see, essentially good, people digging each other out over such things. You are right to vent about these points and I love reading your blogs.

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  3. kerryfender Post author

    Thank you, Les.
    While I really do feel for those whose circumstances are more difficult than my own, I still feel it’s important that families like mine be allwed to speak up about the positives, because it’s possibly the only way that we will ever challenge the negative perceptions that society has about Down’s Syndrome. Whilst not belittling the serious medical and/or behavioural issues that many face, it is society’s negative attitudes and beliefs that do so much to hold many people back from living the best life they’re capable of. In many cases Society disables our loved ones just as much as the extra chromosome x
    Hope you and Bruce are keeping well

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    1. kerryfender Post author

      Thank you. I’m really glad this has been helpful – I was concerned I might only be pouring oil on troubled waters x

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