The Elevator Pitch
When Covid restrictions started to ease and we were able to take Rory out and about, we realised that his appearance (at the time it was his mass of bandages) invoked curiosity from strangers. We quickly learned that we needed to prepare our 'elevator pitch'; a quick fire explanation that answered any questions without taking up too much of our time, nor encroaching on Rory's privacy. We thought we had that one fairly sussed:
"He was very poorly when he was a baby. The doctors saved him, but they couldn't save his leg."
And that's fine for most adults. It's the truth in the most simplest of terms so it does the job and allows us to move on. We were sorted... right?
The Prompting Incident
August bank holiday and our traditional twice-annual camping weekend came around, where we had our first encounter with a strange child (strange in the unacquainted sense of the word, not peculiar). We were in the playground with our friends, Pete was helping Rory up a rock wall and a little girl sat at the top eyed his stump and asked in that brazen way that children do; "what's the matter with his leg?".
All of a sudden my well-rehearsed default response fell into doubt. This wasn't a sympathetic old lady in the post office. This was a child in a playground; somebody who, if this had been in a few years' time, might have befriended him and run about with him, initiating a friendship that would last a mere weekend but stay in his memories forever. In that moment, I didn't want to use the term "poorly". Pete answered her straight away with our familiar stock-answer but in my mind I was already backtracking. My concern with using the term "poorly" around other children is that I don't want his peers to view him in that way, in case they treat him as such. Of course, this applies to adults too, but they're not the ones who are interacting with him, engaging him in their activities. I feel like adults are also more able to distinguish between "was poorly" and "is poorly". We know that Rory is no less 'able' than others his age, he just needs his prosthetic to walk, so him being viewed as physically weaker than other children is inherently incorrect. It's the reason why we sometimes have difficulty thinking of him as 'disabled'; to us he isn't. From this moment, our elevator pitch was reverted to draft; do we mention the P word around children!?
Rory has his friends from baby group, he has a cousin, and he has older friends who are the children of mine and Pete's friends. All of these other children have known Rory from day one; they knew when he went into hospital, they knew when he came out, they've watched him develop and they've seen him play quite capably. As such, I'd never worried about their perceptions of him. Their love is unconditional; they're practically family. I have obviously thought ahead to school, but again, I'd always settled any anxiety in that respect by reminding myself that after the first few days of introductions and gauging each other, he'll make a set of friends who will accept him forever. Naively, I hadn't put enough thought into the one-off friendships. Playgrounds, holidays, soft-play, the swimming pool. New friends. Brief friends. Unimportant friends and yet just as crucial for shaping the experience of his childhood.
Seeking Help
Following this incident I reached out to the amputee community on Instagram, as I've made my own friendships and connections over the past year that were always going to become invaluable at times like this. I asked how other parents would have replied to this little girl, and amazingly the answers I received varied greatly, more than I ever expected.
One parent and her child (who is much older than Rory), relish the question and enjoy taking the time to answer and share their story. And when your child has survived something horrific, I can see why. The pride, the hurdles the whole family have overcome; it's something to be celebrated and in a way it's what I'm doing with this blog. "Ask don't stare" is a phrase that is used often in the amputee community, and I can fully understand why polite inquisition is better than badly-concealed whisperings.
On the other hand, another parent who responded to me has the opposite approach; they find the question and answer session tedious, and in this mum's message I got the feeling there was almost a resentment in the way that their child is expected to be an educational case study. This actually resonated with me, as I'm conscious as Rory grows up that I don't want him to feel like he's expected to explain anything to anybody. Sometimes a guy just wants to mind his own business and play on the swings! Some people need to earn the right to hear your story.
One lovely suggestion out of all the messages I received was to consider saying that "Rory was poorly but to make him better the doctors had to take his leg - and now he's a superhero!" Whilst this still acknowledges the fact he was ill, it emphasis his strength and uniqueness that should in theory counteract any perceptions of weakness or fragility. This suggestion came from a friend who had used this explanation to describe Rory to her own daughter, so it's good to know that this is tried and tested.
I did joke about avoiding the question through comedy; "a shark took it" or "he didn't eat his vegetables so it fell off" but as somebody else I spoke to cautioned- we don't want to be responsible for kids developing phobias of the sea! And I do agree that honesty will help fuel understanding and acceptance in a world that's only just beginning to welcome diversity.
As one of the messages to me began; "it depends on the person asking and what mood I'm in!" This particular person had been asked about their child's condition multiple times in one day, and to think of how tedious that would become to both parent and child day in day out, is exhausting just to imagine, not to mention unfair.
The weekend in question we were camping with some friends and their two young children under 6. Both of whom have never really asked us about Rory directly; as I've mentioned above, they know him, know of his background from their parents, so they accept him as he is and just get on with playing with him. As we were debating this over a campfire, we actually put the question to them; "what would you say to another child who asked about his leg?". Unfortunately both of them just shrugged! They've never really had to consider this scenario before though. Their response, to me, just reinforces how insignificant his 'disability' becomes when he's amongst true friends.
The Answer?
It's a really interesting debate and one that, as I've quickly learned, has no right or wrong answer. It seems to depend on a myriad of factors; on the child, the parent, plus environmental factors at the time such as who the person asking is, the situation, and how many times it has happened that day!
The working answer I'm toying with at the moment is;
"He was very poorly when he was a baby. The doctors made him better, but they couldn't save his leg. He now has an amazing robot leg so that he can run and jump and climb like you! Isn't that cool?"
I know, I know - "poorly"! I'm still hesitant to use the term "poorly" around children but am becoming more open to it providing we can capture the fact that he's better now; it's all in the follow up! The most important thing for me is that Rory can play and make friends as normal, without being held back by the perceived limitations put upon him by others. Please feel free to leave your suggestions in the comments below; I can see us ending up with multiple versions depending on the scenario.
I did receive some lovely messages from mums of 'able bodied' children who, off the back of my research, were keen to learn the most appropriate thing to say to their child in case they're asked this question about others in the future.
What I would suggest to those parents is to try and be honest "maybe they were born like that, or maybe they were poorly when they were little, we don't know", whilst recognising their present strengths "but look how high they can go on the swings! They must be brave." I don't have anywhere near enough experience to be an expert, but that's my best suggestion for the time being, based on how I'd like other children to understand Rory when viewing from afar...
This scenario will become Rory's burden to bear when he's old enough, so we have to ensure that we are respecting what we think his wishes may be in the future. Therefore as things stand, I'm happy to deliver a one liner that quenches curiosity in the quickest way, whilst not subjecting Rory to having his medical history tossed between strangers in the park like a worn-out football. One thing is for sure; when he's old enough to make the decision himself, Pete and I will always defend him however he chooses to answer the question (if at all).
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