Written by Rebecca Stewart
Something I see my sister struggle with is people’s reactions to Eddison when out and about in his protective clothing. I don’t mean the sort of nasty, vile comments of the truly horrid, which fortunately are very few and far between, but the endless well-meaning comments like “how sweet you’ve come as a bee keeper”, “love your space hat”, or “are you an astronaut?”
Of course no malice is meant but unlike dressing up costumes that can be taken off and cast aside when the game is over, something that is literally a life-saving piece of protective equipment is not so cute and cool for parents who know the reality of forever, nor for the wearer for whom it is a necessary inconvenience and not a fashion or play item.
I am able to look upon this from both sides. Had I not the incredible knowledge and insight that I have learnt over the last three years, would I fall into that category?
Would I have said “Cool hat Buddy” or some other well-meaning phrase thinking I was in some way helping to alleviate all the struggle and stigma that comes along with looking different? I most definitely would have done.
Is my sister right in her exasperation as she smiles through gritted teeth and then has to explain his condition for the umpteenth time, knowing that this brief encounter isn’t long enough for them to understand anyway, and now, whilst just going about their normal business, she has been made to bring Eddison’s condition centre stage again?
It is something I have given a great deal of thought to, and of course, yes she is right!
Why do we, when faced with something new, have to bring attention to it?
Of course the child already knows what they look like in their hat, wheelchair, glasses etc (and probably feels deeply insecure about it), they don’t need any comment from me to remind them. Why can’t we instead, ignore the very thing that makes them different and interact as if it wasn’t there. I know it may be difficult but if we really feel the need to engage why not try harder and think, “What would I want?” How would I feel?
Something else to consider is that, although this may be our first encounter with something new, for the family this will be the millionth time they have heard our comment, or one like it, and almost certainly ours will not have been the first of the day.
There are of course different levels of well-meaning or, “I am interested tell me more” type comments and questions that my sister, her husband and many other parents and people in similar positions have to deal with on a daily basis.
The “will he grow out of it?” question. Not unreasonable to show interest and ask questions you may say. And of course, in the right circumstance and setting, questions of interest show you want to learn more which is always appreciated. However, this is a question my sister has been asked whilst Eddison has been standing with her on many occasions!
I know we are all guilty of having the odd adult conversation while the children are around thinking they are not taking it in but what we must think is, do we really feel it appropriate to discuss a child and their condition, not knowing what the answers may be, whilst they are right there?
As bystanders we have no idea of the level of understanding a child may have about their condition and should parents be put on the spot to say things they may not feel their child is ready to hear just because we have a free minute to be interested? What on earth would you do or how would you feel if they say what, may be the likely truth, “No they may die from it”? Is that something we would want our child to hear us saying about them?
We must be more responsible and think harder before we ask these sorts of questions. First ask yourself, “What might the answer be? Is this an appropriate place and time to discuss this? Am I prepared for the answer?”
Another gem; On the occasions my sister has gone to great lengths to explain Eddison’s extremely rare condition to someone, that person then feels the need to reply “Oh yes I know all about that my Uncle/Auntie/, child on my street etc., has that” or “Oh yes my Dad has that a bit”! There are currently under one hundred people in the UK with XP, the chances of you actually knowing someone with the condition are rarer than you having the condition. And of course you cannot have XP “a bit” as indeed is the case for many complex conditions.
Why do we feel the need to make these particular comments? Perhaps we feel this a good way to connect, empathise and show our understanding, however the person we are talking to is more likely to be left feeling we haven’t understood at all and made light of the seriousness of what they are going through.
Then of course there is that absolute champion comment of the ignorant, “But he doesn’t looked disabled, he looks fine”!
My brother in law has actually had to stop a man in a Tesco car park from trying to wrench open their car door whilst Eddison was in it because he didn’t believe he had the right to park in a disabled parking bay (Eddison is a blue badge holder and so of course is entirely entitled to) all because he didn’t think he looked disabled enough!
Not content with Andrew’s explanation he then proceeded to take photos shouting, “I will put these all over Facebook”, in some idiotic attempt to name and shame. All this whilst Andrew was simply trying to buy the weekly shop, a task that, let’s face it is difficult enough with two small children in tow. In believing to be a well-meaning upholder of the appropriate use of disabled parking spaces, this person put Eddison in a very dangerous situation whilst causing distress to him and his brother and untold angst to Andrew and Nicola. Why do we have such preconceived ideas of what “disability” is and looks like?
The more I read of people’s experiences with the well, and not so well, meaning public the more this statement of “Not disabled enough”, seems to come up. I recently read about a woman who was told she, “Didn’t look blind”! So what does disability look like? Why do so many tend to look on disability as a living breathing thing? Why do we see it and not them? Why is there even a “them” and not an “us”? Because let me tell you, disability looks like you and me and the man next door and the kid down the street.
Now don’t get me wrong my sister and the many thousands in her position don’t spend their day putting us right. In fact they usually go to great lengths so that we don’t feel awkward or bad about our misplaced well-meaning comments.
So I suppose what I would like, is the next time any of us find ourselves in a situation faced with something we don’t understand or is different, we stop, for just one minute and before we embark on our ‘well-meaning’ comment we think,
What is life like for parents of children with extra needs or disabilities?
Do we really think that having to talk about it with a stranger is going to make their day easier?
Is what we are about to say going to be helpful?
Have we made that person feel better or worse having said our piece and toddled off to enjoy the rest of our day?
And in doing so realise that we are able to talk to this person in exactly the same way we would anyone else. We don’t need to feel guilty for not talking about their ‘disability’ because for Eddison and many others like him that is exactly what they want.
So break out one of those phrases we all have for strangers we meet like “Isn’t the weather awful” or “Love your bag where did you get it?” Or even “What beautiful children you have” and if we find ourselves wanting to ask, let’s stop and go home and google it instead!
As someone who has made these mistakes this is exactly what I intend to do and maybe just maybe, if we all did this it could make the difference between ruining someone’s day and making someone’s day.
I for one know which I would rather do.
Let me leave you with this little poem I wrote, for us all to take a minute and reflect on.
My name – Disability
Am I black, white or green or blue?
Brown or a multi rainbow hue?
I’m sure I don’t know, Do you?
Am I tall, fat or short or thin?
Do my ears stick out or my knees turn in?
I have no clue, can you fill me in?
Must I use a stick or sit in a chair?
Has my eyesight gone or just my hair?
I am not sure but, why do you so care?
Must my limbs be strange or my hearing gone?
Should I have low IQ or no voice for song?
I think you may be getting this wrong.
Must it always be something you can see?
If you are enlightened then, tell me, please?
What is it I look like, Disabilty?
When you look only at me there is something you’ve missed
A human being you have just dismissed
A human who spends all of their day,
all of their energy just to say
“This is me, I am right here
Let me say this and make it clear
You are my disability that much is true
But you belong to me, not I to you
And from each other we may never be free,
but this is what I look like and you don’t define me.”
To find out how we work tirelessly to improve the lives of patients and families affected by the rare condition Xeroderma Pigmentosum visit http://www.teddingtontrust.com and follow us on facebook and twitter.