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.