The (very) least I can do?
It’s funny isn’t it. When you’re a kid. The bullying and harsh words that get thrown at you for being different. They really stick with you. The effects ringing round your brain decades later. You don’t need to be a sibling to know that. Just someone who stands out.
But as a sibling, it’s interesting that the worse insults are often actually just weaponised truths…
“Your sister is such a sp&&&c”. Yes, poor use of language but technically correct… and your point is!?
“You should be the cr&&le in the wheelchair, not your sister”. Sigh, like I haven’t thought that one before for hours on end in my most guilt-ridden moments… Zero points for original thinking!
And then there’s…
“Your cripple sister – she shouldn’t even be alive”.
Lovely.
I don’t remember this last one being thrown at me many times. But it’s standout the most upsetting because it’s true. It’s true because – but for the quick thinking of a team of medical experts and a super fast transfer 60 miles to the wonderful Great Ormond Street Hospital 40+ years ago, she absolutely would not be alive. Fact.
These words… sp@@@c, cr&&ple, r@@@rd. People usually don’t know what they actually mean. Some people don’t even know they hurt. Or even that they’re technically (and, I feel, morally) incorrect to use.
As a child, I never asked for help. Never talked to a teacher, or my parents about it. As a sibling, I learnt to fix things myself. Not cause any trouble for people. They were busy enough. I, understandably, wasn’t the priority. So I fought my own battles.
But most of the time, it feels like there’s nothing you can do. Not really. Most people are kind people who don’t mean any harm. It’s just a word. They just don’t have the same experience and perspective as I do as a sibling. They don’t know about the richness of growing up with someone who sees the world so differently – as my sister does. they don’t know about the emotional rollercoaster of being a sibling. And they don’t know the guilt, as a small child, of wishing that my sister wasn’t disabled, because then it would mean I wouldn’t get bullied’. And the ensuing guilt of focusing on the impact on me, rather than the person really in need.
Why would they know all that?
Obviously, you can’t change people. In fact often when you call it out, you feel like you’re the problem. ‘Chill out’ ‘It’s just a bit of fun’. “Everybody says it”. ‘Don’t take things so seriously’. ‘It’s just something I say, I didn’t mean YOUR sister’.
The disability ‘me too’ moment
‘Those with disabilities – they just haven’t had their ‘me too’ moment, and it’s desperately overdue’ a friend quite rightly said to me recently.
She’s right. But whether it is having been Locked up against their will – and abused – as in the cases we have seen over the past few years. Or being deprioritized for medical care or vaccines during the Covid pandemic when many of those with disabilities were more at risk than many in the wider population. If these things didn’t trigger the right ‘moment’ for some of the most wonderful people – who just happen to have a disability. Then will that moment ever happen?
The sibling view
When I asked some other siblings if they encountered the same thing, the answer was a unanimous ‘yes’. But the way people dealt with it was so varied.
“Sigh… I used to get really angry and explain to people – but now I often just don’t have the energy”
“Sometimes I look at someone right in the eyes and ask them to repeat what they said – it does make them squirm”
“Even members of my extended family have done this – when I remind them that they have a family member who is disabled, I just get told to ‘chill out – it’s only a joke”
For my part. I find it much harder to be patient with people as an adult. They should know better. But I’ve had more practice in dealing with it now!
So what would my advice be?
Well, I focus my efforts on situations with people whose opinions I care about in the first place. I explain why it’s important to me and why it upsets me. I always approach the situation assuming that people just don’t understand. Regardless of this, I think people find it hard to talk about.
Yet these skills fare me well. I’m often professionally recognised as someone able to handle difficult conversations. I see different perspectives and am happy to tackle questions that others may shy away from. No professional conversation is as hard, or hurtful as the ones that you have to have growing up as a sibling.
At the same time though, I understand those siblings who choose not to speak out – and those who are exhausted by it. There are so many other demands on your time as a sibling, ‘disability word police’ may not always be top of the list!
But while I have the energy, I’ll continue to correct people and ask that they stop. I don’t mean them any harm. Or wish to cause them problems. But if I were saying something that hurt someone else and I didn’t know. I’d want to know. When I found out, I would apologise. And I would not do it in the future. I think it’s important to give others that opportunity too.
And in a world where those with disabilities are becoming significantly more recognized, known and empowered. But where that wider ‘me too’ moment seems a long, long way off. In that world. Correcting these misunderstandings… just feels like the very, very least I can do.