As soon as I start talking about Rory, I can hear people saying, ‘Here she goes, the Down Syndrome Expert’.
I am nowhere near an expert but over the years you pick certain things up. It is something that comes with being close to someone with Down Syndrome.
I’ve learnt over the last 3 years that people will judge you, it doesn’t matter who you are or what you do. Someone will judge you for something. It is something in life that we have to deal with but I one thing I ask people not to judge me about is being a sibling to someone with Down Syndrome. People judge and it is a natural thought process, we judge to determine whether that person is someone who we would want to be friends with. But judging can go wrong. Being a Down Syndrome advocate can make you feel like you are unapproachable. It is hard to explain to people about something you feel so passionately about, especially when it isn’t a part of their life like it is yours. As a mum I am open to judgement and as a blogger I am also open to people having their opinion.
You feel judgement the most when you are out and about, more so when Elsa and Rory are together. Not only do people judge that Rory has DS but that Rory and Elsa are so close in age. A few times people have not understood or have voiced their opinion to us and to put it simply, their opinion wasn’t the best. When Rory was born, I had an opportunity to use my voice for the better. I do nothing but good things with my voice when it comes to supporting Rory and other families. I do as much as I can. There’s many things as a mummy that people can have an opinion about, vaccines, food and discipline to name to few. When I talk about Rory, I don’t want to be judged. I write and talk to support, to help, to raise as much awareness as I can. Some times it can be hard to speak up and the one worry I have with the internet is who and how many people will read my post. The amount of people who read some of my posts is crazy and there is no way on this earth that I would be able to speak in person in front of that many people. It is all down the wonderful thing that is being judged.
I’m guessing maybe I shouldn’t let other people’s judgement get me to so much. On the outside it might seem as if being a DS advocate comes easy and I don’t mind getting my voice out there but when you think that everyone is going to judge you on every word you say, it can put you off saying anything at all. Being a blogger and an advocate doesn’t mean that you don’t mind people passing judgement or that you can just take it on the chin. At the time I don’t mind writing my thoughts down but as soon as I press publish, that is where I start to worry. I worry about what people will think about what I’ve written about Rory and to make it feel worst, I feel like I have to write it down and explain it to someone who doesn’t have a Down Syndrome connection. On one hand it feels great to have my articles shared and posted but on the other, I am worried about being judged as a Down Syndrome advocate.
It might be different for a DS advocate parent but for me, a sibling it can feel like I am out-of-place. A lot of bloggers and people who speak so openly about DS are parents. It can be quite intimidating. Of course, it is nice to speak to and hear of other sibling that write like I do but trying to fit in with parents is hard when your connection to Down Syndrome isn’t a maternal one. Being judged as a Down Syndrome sibling advocate is hard and the majority of the judging is what I do to myself.
2 thoughts on “The Judgement of a Down Syndrome Sibling Advocate”
I am a sibling, it has been 35 years of active judgement. The feeling of not fitting in has always been there. The parents group seem to have a collective voice however I am yet to be part of an international siblings group. There are several aspects which need addressing, as advocates we can contribute significantly. Thanks for writing about what many of us experience.
Keep posting! I’m a state leader for Siblings Australia. You can find SibChat on Facebook if you want to join a great bunch of Sibs where there is no judgement and so much support ❤️