Back last year I witnessed two families within days of each other, and each one stuck in my mind for very different reasons. It really got me thinking about public perceptions of life with Down syndrome and why they feel that it’s so terrible. It made me realise that although unfairly, our actions in public really do impact how society views learning disabilities.

I just want to point out that this is no way a judgement post from me. We all have bad days, hard periods and different circumstances and I’m not judging anyone, just making an observation. Having to show the best side of yourself at all times in order to prove Down syndrome isn’t a burden is exhausting, not to mention unrealistic and unachievable. However, unfortunately people are watching us whether we like it or not and our actions are always shaping societies perceptions of families like ours.

Like I say, this is not a judgement, I didn’t know these families from Adam, but I’m just imagining how members of the public would have viewed it.

Incident 1

I was in an extremely busy Marks and Spencers food hall when I noticed an older couple with their son who had Down syndrome. They must have been late 60’s to 70’s and the son I would guess at 30’s. Now when I say I noticed them, I was actually made aware of them because the man was shouting at his son and complaining loudly to his wife who was slightly in front. I shouldn’t have really paid any attention but I couldn’t help myself, I always feel drawn to other families who have children with Ds and this was no exception. I also noticed many other were watching and this actually upset me as I knew what they were thinking. The father was complaining that that the son had just hit him and was now ignoring him, apparently the father did not like being ignored. He was making it well known that his son had been misbehaving a lot that day and that it was driving him up the wall.

I hate judging on appearances, but this was an older couple who were dressed in the old fashioned way you imagine older people to be dressed. Their son was also dressed in the same way, old man anorak included. Actually, he looked exactly what I imagined when I thought of Down syndrome before River was born. He was looking at the floor, shoulders hunched, following behind Mum and Dad. His parents who were openly berating him in public. It just made me feel really sad. I mean, can you imagine a fully grown typical male being spoken to like that in public by his father? It wouldn’t be acceptable to talk to any other adult like that so it isn’t acceptable just because his son had ds, he is a man and deserved respect. This display showed no respect, regardless of whether it was ‘just a bad day’. It went on for a while until eventually the Dad huffed off and the others followed.

Incident 2

It was only a few days after the first encounter that I braved soft play with the boys, I’m so glad I did. I was paying for coffees when a group of four people caught my eye, they were sat on two sofas facing each other not far from me. They only grabbed my attention because they were laughing and deep in conversation, I didn’t even realise at first glance that one of them had Down syndrome. But then I noticed and it instantly made me smile, they just looked so ‘normal’. These four people, two men and two women, I’d say were relatively similar in age at early to late 40’s, and I’d guess that they were siblings. One of the men had ds but they were all talking, he was one of them, part of their conversation. They were all laughing, all interacting and all included. They were all happy!

Do you know what I noticed the most though? The fact that nobody else was watching them, not a soul was paying them any attention. I actually wanted to shout out loud “look at them, just look at them!”. This was a big deal for me, watching a man with Down syndrome being an active part of a discussion, being a valued member of a group and enjoying his day just like anyone else. No big deal, just living his life and being loved. But nobody except me even acknowledged them.

Something dawned on me that day and I found it pretty tough to take. Society will only notice and remember the negative images of Down syndrome. Nobody was interested in the second family, but the first one had grabbed everyones attention and they would always remember it. That’s the situation out of both of these that will stick in minds and be remembered when they think of Down syndrome, with the happy family being forgotten. It was tough for me to take because we are extremely positive about River, live a very happy life and to be honest it doesn’t really effect us all that much. But maybe people just don’t notice, maybe people don’t ever look at us and associate us with what Down syndrome really is. Maybe we won’t be remembered or make a difference to perceptions in any way. That hurts.

It made me realise that we are always being judged, are always on display and will always be a representation of what Down syndrome means to a family. That’s a huge responsibility! Mums are judged every single day in modern society, for every single thing that they do. If you’re a mum, then you’ve been judged for your actions without a doubt. It’s hard and it’s wrong, but it’s just the way it is and luckily for most parents it will end. The truth is that for typical parents having a bad day or a public outburst is not going to influence how the whole of society feels about your child. Nobody is going to watch your child in public and think that every other child in the world is just like yours. You and your child will not be put into a box of ‘tragic’ just because of one negative incident. The worth of your child will not be decided because of them acting out once in a while or because you look like you’re hanging on by a thread. Nobody will think your life would have been better if your child had never been born just because you’re having one day that sucks. That’s my reality. Perceptions of my child and his worth, are based on what the public sees and how they view us. Actually, the actions of every other family with children who have Ds are influencing how society views every other child with a learning disability. It’s not right, but it’s true as we’re all placed in the same category.

For me personally, I don’t mind people watching us, it genuinely doesn’t worry me in the slightest. I’m very comfortable with Rivers diagnosis and I enjoy the fact that people can learn from him. But it’s a huge responsibility knowing that we are always being watched and scrutinised and a lot of people just don’t want that. It’s tiring always having to prove people wrong, it’s exhausting trying to show the world your reality and knowing that they don’t quite believe you, and it’s hard to constantly have to defy peoples assumptions. Not every family wants to be the poster family for ds, and I assume that the majority of families actually just want to be left alone to live their lives. Mot people just want to get on with life without having to be a representation of every family who happens to have a member with Down syndrome.

Take the first family, they could have just been having a really shitty day and everything was just getting to them. Or maybe they’re always like that, I have no idea. Either way is it right to assume that all parents of children with Ds are the same? That all people with Ds are the same? Because as awful as it sounds, this man fell into the old fashioned and false stereotypical image of Down syndrome and the laughing family did not. And lets not forget that this first family were older parents and would have faced some extremely tough times in their lives. When their son was born they were probably told horrifying things, had a serious lack of services, no support and struggled with their place in society. I have no doubt that it was a very hard existence in the past and am so grateful that times have drastically changed for the better. It isn’t perfect by far, but that family are not a modern and realistic vision of what Down syndrome means today. They do not represent my family or any others that I know.

I guess what bothered my the most is that I know people were watching and judging, being thankful that something as terrible as Down syndrome had ever happened to them. They never even glanced back at the family who were enjoying themselves in a very normal situation, because that’s not what they associate with our families. They don’t view us as happy, they view us as unfortunate and the happy family goes against everything society has taught them to believe. Incident 1 will be remembered, incident 2 forgotten and that’s incredibly sad, because it means that whatever we do to try and prove to people how lucky we are will fall on deaf ears. It’s so hard to break down societies old fashioned and negative views of Down syndrome and that is a huge responsibility for all our families.

Thankfully though it’s a challenge that more and more families are rising to every single day and I am thankful to all of them. I will never stop trying to change perceptions and helping people realise that their views just might be wrong.