A few weeks back, I did something stupid. I looked at something online, which I wish I hadn’t seen. I often see on social media, people getting on their moral high horse about various pages, groups, forums that have been set up, which say appalling and disparaging things about people with DS. I see that others get so worked up and angered with these pages, reporting them, mouthing off at them, whereas I never have. I’ve mostly just chosen not to read on and to try and ignore it, because let’s face it, what am I going to be able to do, to stop these small minded opinions? A few weeks back, however, I delved deeper. I was intrigued. These people can’t hurt or anger me, surely. It’s just words, I thought… but as I read on, I was sickened, and maddened to hear such vile human beings speak so utterly appallingly about people with DS. They talked of how parents like Chris and I must have been related (incest) to have a child with Down Syndrome. How he must have been born out of my back passage because everyone knows that “shitting out a retard” is how they enter the world. And seriously this is only the half of it. Hurtful, disgusting words. Words I thought weren’t capable of hurting me. I was wrong.
Who ARE these vile people anyway? I’m told they’re called Trolls. But do they really get that much satisfaction in putting other people down? It’s just odd to me.
The internet is infinite and we’re never going to be able to change the perceptions of everyone. I’m well aware it’s not the people reading this that need educating about right and wrong. It got me thinking though. In everyday life, I still come across people that say the odd ridiculous thing. I don’t for a minute put them in the same category as the people who make it their mission to write such awful things on the internet and I’m not going to tarnish this blog post with talking any more about those types of people. What I am going to do is talk about people I’ve come into contact with recently, that every once in a while say something that bemuses or baffles me.
So this actually happened the other day. I had been on a night out and was walking back to the train station with a friend of a friend. I say friend of a friend as we didn’t know each other at all, so obviously making polite conversation. We chatted work, kids; the usual small talk on our way home and somehow (and I never quite know how these subjects come up) I told her that Oscar had heart surgery and then went into more detail about him having Down Syndrome. She seemed fairly interested in it all… And at the end of the conversation she turned to me and said:
“So, his heart’s cured now?”
“Yes,” I explained, “he’s monitored fairly regularly but according to the surgeons, he now has a perfectly normal functioning heart just like you and I.”
“Wow, that’s great.”
“It’s amazing, isn’t it?” I said.
There was silence for a few seconds while she obviously thought what else to add… and then out of her mouth, this corker:
“And the Down Syndrome? Is that cured too?”
Woooooooooow!!!!!!! I kid you not, ladies and gentlemen, she honestly and truly said that. A 40 something year old, well-educated woman, asked if Oscar’s Down syndrome was now cured! I mean honestly???? Trying hard to stifle my amusement I explained to her (kindly) that the Down Syndrome is something that would never be cured and I was ok with that.
Of course there’s always the classic comments about “Aaaaahhhhh people with Down Syndrome are so happy and loving”. It’s then I wish the person sharing that nugget of information with me, were with my “oh so happy and loving child” when he doesn’t get his own way about something. OR the times he’s gotten up so ridiculously early that by 10am is beside himself with tiredness so he’s just generally foul (and I mean that with the deepest of love)… Always so happy? Ummmmm… not so much!
I was in Waitrose the other day (I appreciate that may make me sound posh… I can assure you we don’t do our weekly shops in there its more that it’s the most convenient to whiz in and out with two toddlers and baby) and a lovely cashier lady took a particular interest in Oscar. She asked me his name, his age etc. She was lovely. I mean truly lovely. Then she dropped this on me:
Cashier “We have quite a few of “those” come in here.”
Now by “those” I’m guessing she was referring to people with DS. But really? THOSE?????
Perhaps this is when I should put her in her place and tell her just how annoying her comment is. But instead, I smile and walk away.
I was also asked this week, where Oscar is “on the spectrum”. This question comes up from time to time and while I understand that the person asking is usually well meaning, I often (gently) try to explain, that it’s really not the ‘done thing’ to ask such a question. I mean it’s a bit like saying, “So how clever is your kid?” It’s just not something you’d ever ask, I don’t think. Like the rest of us, of course people with Down Syndrome have different levels of IQ/intelligence but it’s not something I think is appropriate to ask out loud. I much prefer the question, “So how’s he getting on?” as it tells me that they’re kind of asking the same sort of thing in not so many words… but it doesn’t feel so blatant.
I’ve written about if before but I once had someone, (again a friend of a friend), ask me, in a very loud voice at a party, “Are there any indications of just how mentally retarded he is?” I felt those around us shuffle nervously, looking at the floor, probably as shocked and dumfounded as I was. At the time Oscar was under a year old, I was pregnant with Alfie and I didn’t have the strength to say anything, other than, the above spiel about “how great he was doing” but I was honestly completely floored by her. I wonder what might be my reaction to this question now, 3.5 years later. Would I have the strength to put her in her place? I’m pretty certain I would now. This is the year 2016 and people are STILL saying such ridiculous things?
I never think people say stuff intentionally to offend or hurt feelings. I guess, as I’ve talked about before, it comes down to lack of education on the subject. There are times when I’m so totally taken aback by what people say, like the mentally retarded thing or the cured Down Syndrome, that I can’t quite believe what I’m hearing.
Words I may be able to block out but actions on the other hand perhaps not.
What if I was to say that over the summer Oscar wasn’t invited to one of his friend’s birthday parties? What if I were to say the person hosting the party invited all the other children and parents in our small friendship group, except us? Was it an oversight and they simply forgot? OR was it, and it’s with a heavy heart I say this, the fact that Oscar has Down Syndrome that they didn’t really want him there? The last time he’d been round their house he’d been having a kinda crazy day. A little more wired than usual. But surely I can’t be that paranoid, can I?
For the record, I don’t for one minute think we’re always going to be invited to every party. My ego’s not that big and I know it can be hard trying to restrict the numbers to a manageable amount. But the thing is, I truly thought this child was Oscar’s friend and at the very least, that their mother was my friend too. The day of the party came and went and if I’m truthful, I expected a text or some kind of contact that evening. But when nothing came and a photo appeared on Facebook of the party, I realised it probably wasn’t a mistake after all.
This was quite a few months ago and I’m over it now. I’ve since realised there are far more important things to worry about than a children’s birthday party. I felt gutted at the time, not about the fact that he’d missed out. I know in my heart, Oscar is loved and has friends, I knew he’d be fine. But for me, this signified the first time I have ever felt that my little boy had not been included in something. Missed off the list. Not wanted somewhere and that was hard to accept.
So, what’s my point? I guess it’s that people are always going to say and do things that are out of your control. You can get cross, get upset but it’s not going to change anything. A thicker skin is what’s required because if you challenge everything everyone says or does in life, you’d be forever fighting. I’ve grown a thicker skin since having Oscar although I’m wondering if that’s what happens when you have kiddies regardless of DS or not. I think perhaps the DS gives you a different perspective on things. You become fiercely protective, knowing that probably for the rest of your life, you’re gonna need to look out for your little guy. The non-invite to the party was a first but realistically, it’s not gonna be the last, is it?
I’d like to point out that 99% of the time, people are amazing. Like I said, I’m sure people don’t mean to say/do such ridiculous or hurtful things… I guess it’s them not knowing what to say (I’d like to point out, at times I can be just as much of a numpty putting my foot in it when talking to other people). So am I gonna change? Become one of these confrontational, hardnosed mothers that put people in their place? Probably not. I’ll probably just smile sweetly as I usually do, because for the most part, the people saying the comments or not inviting him to parties or writing dreadful things on the internet (too cowardly to say it out loud, I suppose) are the ones you have to feel bad for. Because they don’t have any clue what it’s actually like to have the magic of my little boy Oscar in their lives. If you’ve ever known anyone with a disability or a difference, I suspect you know exactly what I’m talking about