How not to be an arse

Ok, so on the flip-side to yesterday’s post, todays title is ‘how not to be an arse’.  It is obviously human nature to be inquisitive, sometimes nosey and to wonder about things that we see, but for this post I am mainly discussing strangers and their lack of apparent filter.  Also, I am talking about adults, who really should know better!    

We are lucky and we do not experience an awful lot of arse-hole-ness as I’m going to call it but I know other people with ichthyosis have to deal with way more than we do.  To be honest, any amount is too much.

A couple of incidents have happened to us over the last few years that have stuck in my mind.  Alfie was probably around a year old at the time and it was around this time of year.  I was in our local shop and a lady in front of me in the queue to pay (don’t think she lives in the village as have never seen her before or since!) turned round and looked at Alfie in the pushchair (as a lot of people do with kids) but then her smile vanished and she blurted out “I would take him to hospital if I were you, what’s happened to his skin”.  Honestly I was so taken aback and shocked at the complete rudeness that I didn’t have a good comeback prepared.  I think I muttered something along the lines of Alfie having a genetic skin condition and that was it.  It was only on the way home that I thought about what had happened and couldn’t believe the cheek.  I burned the image of that lady into my mind and vowed to give her a piece of my mind next time I saw her…but I never have!

I mentioned yesterday that we flew out to Boston to stay with Lee whilst he was out there and again there were a couple of incidents that come to mind.  It was hot whilst we were there so Alfie has his shorts and t-shirts on and I guess more skin was visible so more noticeable (but still, engage brain before speaking!).  We were shopping in Macys and a woman came out of nowhere, starred at Alfie and exclaimed in a really loud voice “Poor little peanut!!” again, shocked at the rudeness and intrusiveness of the whole thing!!  Another day, mum and I had gone for a huge walk and were waiting to cross the road.  This man cycled towards us, looked down at Alfie, grimaced and crossed himself – I don’t know if that was to pray for Alfie or to protect himself but either of those are unacceptable!!

Since then I have noticed overly long stares and funny looks but no one has been outright verbally rude to us when we are out.  However, people do say things without thinking and are genuinely not being rude but perhaps just being a little tactless.  Here are a few things to think about if you see a stranger in the street with a visible difference (not exclusive to skin) and are thinking about asking things:

-          - Questions from strangers can be intrusive.  You are trying to go about your daily life when    someone asks “what happened to your skin”.  Not nice

-         -   Would you like to be stared at? And even worse, whispered about?

-          -  Would you like to be pitied?

-         -  The person you are looking at has probably dealt with what you are about to ask multiple      times that day/week/month and they are fed up of it

-         -   Is it actually any of your business?  Do you need to know?

-         -   Would you like to speak about the intimate details of your health condition to a stranger in    the street?

Of course, and am speaking purely from my point of view as a parent of a young child here, if you engage me in conversation, it naturally comes up in an un-intrusive way and you are genuinely interested in knowing more, I will explain ichthyosis to you and signpost you to where you may be able to find more information.  On the other hand, if you are rude or you over-react about my child, be warned that I am now prepared for your comments and stares and I won’t be nice!  Also, bear in mind that with very young children, they often don’t notice differences in the same way adults do and they don’t always realise they are different.  Alfie, at the moment, is starting to notice his skin a little bit more and he is quite matter of fact about it, I want him to stay that way and not become self-conscious because people are rude or ask him things that don’t concern them.

As a parent I am fairly open when it comes to explaining about ichthyosis to people I meet (not talking about strangers here but people I am in more regular contact with such as other parents at playgroups or with friends), I encourage their questions and I will happily answer.  But this is because I only surround myself with nice people who ask in the right way and don’t over-react when I tell them things and I leave the arses to go about their arse-hole-ness.