I’m gonna tell you a little story. It’s not one from the age of beautiful fairy tales or a favourite bed time story. It’s not a classic tale from another era or a traditional folk tale or fable. This is reality; real life. It’s something that happened to me and to Reuben in our very own community and one which was very poignant in our own world.
On this particular day, I chose to pop to Tesco as I needed a few things, mainly for lunch boxes. It was a sunny day, so I put Reuben into his wheelchair and off we went, walking through our local shops, chatting together about what we needed to buy.
Fairly soon after you enter the supermarket, there’s the bread and cakes on the left hand side. Reuben and I stood there looking at all the produce, as I pondered what would be best to buy – what cake wouldn’t melt and squidge on a warm day when Harry took it on his school trip. Reuben insisted on chocolate cake, but as he would opt for that for breakfast, lunch and dinner, it would be surprising if he considered anything else!
There was a lady standing next to us, to our right. I was aware she was there but it wasn’t until I felt her intense stares at Reuben that I really noticed her presence in more detail…..staring. Let’s be honest – since the twins have been born we’ve had our fair share of ‘starers’. I’ve become fairly accustomed to the side glances and whispers. In itself, that’s quite an accomplishment to say that, as in the early years I lived in dread of going out with the twins and all their equipment. We got a lot of unwanted attention when Zach was on oxygen as I lugged his little oxygen tanks around with me…sometimes people acted like he had the bloody plague and would look at his tubes as if they’d seen a disfigured monster in the pram rather than a baby who’s lungs weren’t tip top. Harry frequently asked ‘Mummy, what are they looking at?’ to which my reply of ‘just how awesome you are’, seemed a bit of a cop out. But I think as a special needs parent, you develop a very useful skill of thinking on your feet when you least expected to have to.
Back to that day though. This day was a bit different, as the lady standing next to me bent down to Reuben and from her crouched position, she pointed at his legs and said ‘what are these things?’
Note here, she wasn’t completely delusional.
She wasn’t asking what the concept of limbs were when she had two legs of her own. She was referring to his splints (or for those who want the accurate name, his AFOs – Ankle Foot Orthosis). He wears these to optimise the position of his ankles and feet, basically. They aren’t ugly; they aren’t huge contraptions. They are discrete, made of plastic and covered in footballs.
It took me by surprise a little that she was so forward, but I answered her question. Let’s get this straight, I am a parent who never minds questions. I like to think I’m quite approachable. Not every parent of special needs children sits in this camp, but I’m quite an information sharer and have come to the conclusion that by answering questions, it can educate and teach people things they may not know. I think you quickly learn who is questioning because they want to learn and are truly interested, as opposed to those who are just plain nosey and need some new material for their weekly gossip sesh. For some things need to remain private. Reuben and Zach have complex medical issues and even as their mother, it’s not my place to share these personal details with the world. I wouldn’t expect a stranger in the queue in Costa to tell me their diabetes regime or someone at the park to tell me their Irritable Bowel history. However, in general terms of conditions like Cerebral Palsy or Chronic Lung Disease, I have never had an issue in teaching people about my children’s conditions, answering their queries and questions. I think it can only empower people to know more and truly understand the concepts – which in turn can break down barriers to disability. It’s much harder to be scared of things when you understand them. We still live in a society in which although there’s been leaps forward in disability awareness, it can still be a taboo subject at times and some people are nervous around what they don’t know. If we don’t talk about it, how will this ever get better? Scope, a national charity, have a big campaign called ‘end the awkward’ which discusses just this.What happened to us next that day was possibly the most awkward thing I’ve ever experienced.
Having had the answer to her question, the lady then turned to Reuben, face to face at his level, and said ‘gosh, if your mummy hadn’t have told me, I’d never have known you were a mong’.
Yep. You read it right.
Unbelievable, yes? No. True as day, she called my son a mong. What do you do with that??
Now, I’ve had a long time to really try to pick the bones out of this. I’m very open minded. As a midwife you have to be! I think having children with additional needs has made me even more open minded to the world and to the complications life can bring. It’s also made me appreciate the world more and not sweat the small stuff.
This wasn’t small though was it. This was huge.
I’ve tried to think, and I actually feel it’s right, that this lady probably came from a generation where words such as this were well used then. Only time has made them redundant and publically perceived as offensive. Which they are, by the way.
I was so incredibly offended, though at the time in reaction I stood there doing a very brilliant impression of an open mouthed statue. She told me it’d been a pleasure to meet us and scuttled off. (I can confirm here and now, that feeling of pleasure wasn’t mutual).
Did I cry? Yes.
Did I buy the cake? No.
Do I think she was intentionally trying to be hurtful? ….no.
I think she, in her own way, was interested. I don’t think she was being intentionally horrid. (I would like her to tell me what she thinks ‘mongs’ look like though). This was a classic example of where I could have changed something, I could have educated her that she can’t really say that any more. What ever your opinions are on free speech and political correctness, I can pretty much assure you that it’s not a pleasant word to use. I kick myself that I didn’t, but at the time I was so astounded and thinking ‘what the hell just happened there?’, that I missed that window. (For the record, Reuben obviously found her more irritating that she was interrupting our cake selection and wasn’t aware of the enormity of what just occurred).
I debated about whether to write this blog. I know my friends and family will read it and be over protective about our feelings and be really cross. But it’s important we do talk about it. Let’s follow Scope’s lead and End that Awkward. Let’s talk about what’s ok and what’s not ok.
So, it’s probably important to note that this hasn’t been the only time we’ve been on the receiving end of someone’s unthoughtful tongue. So far, I’m lucky in that the twins have never been aware of what has been said. I probably wouldn’t be as understanding if they had I guess, and sadly I’m sure that day will come. But calling some one a mong is never ok. Also for the record, there are other words which are used in daily language that make my skin crawl and my toes curl when I see or read them. Mostly, just in conversation without any intent of offence or harm. ‘Retard’ is my biggest bug bear. It’s never called for, or is ‘Fu**tard’ whilst we are on the subject. Actually, whilst we are at it ‘spaz’ is another. ‘Crip’ (which I’m assuming is originating from cripple), closely follows. I honestly think people don’t mean to use them harmfully and they probably have done it for years, but I can guarantee the feelings that those words evoke are really quite awful and can go a little way into the realms of heart breaking. These are NOT ok.
But being insensitive in name calling isn’t the only thing that we have had to endure as part of this life we lead. Statements and presumptions can be just as hard to cope with. Some of the classics we’ve had include:
‘Ah bless him, is he gonna die soon?’
‘Do you think it’s right you being kids like that out in public?’
‘Your son is really blessed my daughter wants to be friends with him’
‘There’s far too many special needs kids allowed around here nowadays’
‘I’m sure there’s not much wrong with him really, Drs make up these conditions nowadays’
‘Kids like that shouldn’t be allowed privileges like blue parking badges’
Or, the piece de la resistance : ‘He’ll be a burden on you for the rest of your life’.
(Thanks for that).
The thing is, whatever. I have learnt that ultimately all I can do is tell people (when I’m not standing gaping in shock) about how things really are from my perception and hope they listen and take things on board. Even better, I hope we get to a point where the twins can tell them themselves.
Interestingly, it’s not children I ever come across this with, it’s adults. This is where I think it’s a valid argument that half the time these things are said from a previous generational context rather than a want to be cruel. Of course, that does happen at times but it’s important to note that these comments are often in the minority. The majority of people I meet are delightful, kind, generous and courteous. For every one I meet that had questionable intention, there’s another 99 who I’ve been so glad crossed my path. Let’s face it, if we didn’t believe in the potential and the beauty of humanity what sort of world would we live in?
I’d like to think that for the majority of time I try to apply the above quote, yet sometimes you just can’t help being affected. I think what upsets me more is thinking people just don’t see what I see. People may look at the twins and see a wheelchair; they may see someone who has difficulties, yet they don’t see who they truly are. To many, disability defines them, but it actually doesn’t.
They see disabled boys, I see my children with beautiful souls. I see children who smile in the face of adversity. I see courage. I see children who have had to cope with (and coped far better too) more than the average grown man. I see children who laugh a lot. I see caring, loving children. I see children who accept yet then go beyond their own limitations. I see children who are hilariously funny and can brighten others’ days. I see children who are learning to read. I see them exist on chocolate cake (if they got away with it….). I see children who are flourishing under the wonderful school they go to. I see children who are relishing life and enjoying every day surrounded by more love than surely is possible. I see my children. Just children like any other. Just with added layers.
So….if that lady is reading this blog, I actually want to tell you I forgive you. I know you probably never knew your words were haunting me and I bet you never meant them to. But I hope you can learn from it, and realise there’s so much more to special needs children than the labels society forces upon them. Or words that individuals throw around. For essentially that Disney rabbit was right. ‘If you can’t say anything nice, then don’t say it at all’.