It has been brought to my attention that being Kathleen’s voice (my 20 year old daughter with Down syndrome) could mean that I am controlling her and stopping her from expressing herself. So, let’s have it out! Why does she need me to be her voice, you ask/accuse? She’s an adult after all, why can’t she post whatever she wants, whenever she wants, on any of her social media, be it Twitter, Instagram or Facebook?
First of all, anyone who knows Kathleen will laugh their head off at the mere thought of me or anyone for that matter having the power to control her!!
Be that as it may, where do I start?
1/ She tells me “I love you” countless times a day, she also gives me a hug countless times a day. She trusts me. We love each other. Shocking, I know! Maybe you’ve got a different kind of relationship with your own mother but that’s us. How’s that for a start?
2/ Her grammar and spelling are atrocious. That’s never stopped people from posting, you may reply. Touché!
3/ Her cognitive impairment is such that she still thinks everyone is nice and friendly to the point that it wouldn’t take much for her to give out address/phone number/or worse. Fact. She can’t even begin to imagine she could be bullied just because of her condition. She would be really hurt if she came across nasty messages. I could monitor them, you may argue. I agree, but that would be a full time job if she was posting freely! I do however monitor the replies to my posts and we read them together.
4/ I could make her accounts private and protected allowing only people we know, you may further argue. The thing is, that would defeat the aim of raising awareness. All her social media are public in the hope that some of the posts will be read by people who have no clue about Down syndrome, whose perceptions are outdated and will therefore be updated in the process.
5/ Her cognitive impairment is such that although she is legally an adult, and although any mainstream person would pale with envy at her off-the-chart emotional intelligence, she is unable to put into written constructs the complexity and sometimes the simplicity of how she feels and what she means and why. She relies on me to do that. And I happily oblige. I can oblige simply because I know her inside out, because I deeply care about her, because I love her and mostly because she asks me to. She’ll ask me to take pictures and post them. She’ll ask me to write “something “ to go with it. I’ll read it to her; she may or may not understand all of it but she knows it’s all and always will be for the best. She thoroughly enjoys reading and liking the replies, though.
6/ She doesn’t enjoy writing (unless it’s for birthday cards, or copying from the umpteenth YouTube video she watches, piles of notebooks we have, full of them!), She’ll write on Messages or WhatsApp which is when predictive text comes as a blessing (not always, mind you 😱) but they are usually short and if not they don’t always make sense. The truth is, she would rather stick to talking, or interviewing. She can talk the hind legs of a donkey! Doesn’t always make sense either, but in her head, it does. She loves talking about what she likes: clothes, pop stars, music, her upcoming album (don’t ask…) perfume, nail varnish, travelling, modelling, her boyfriend and how much she loves her family . She’s interviewed countless of fictitious people and real people and invisible celebrities (including former President Barak Obama – all I could see was her doing the questions and answers but she sure enjoyed pretending he was there and was good at it!). Actually, we will soon start her own YouTube channel so you can see for yourselves how much she can talk and it won’t be about DS or politics or books, I can tell you that! (yes, I will monitor and for sure edit the content before we post because if I don’t it will be 45mn each and only cause mega problems. But she wants to try it out so we will).
7/Look, there are some fantastic self advocates with Down Syndrome out there, eloquent and educated. I salute them and admire them and support them. Kathleen, on the other hand, doesn’t like to talk about Down Syndrome much, she doesn’t see why Down Syndrome is a “thing” and certainly cannot comprehend the fear that people have of her condition to the point that people like her might be a distant memory in the future. I’ve tried to explain it to her several times but she can’t get her head round it.
Now, that doesn’t mean I can’t advocate on behalf of my daughter. I will. Always. That’s not controlling. That’s loving and caring.
8/ It’s not because she can’t verbalise what she thinks and how she feels that she has to remain silent and invisible. I make sure she doesn’t.
So you see, as long as I’m her voice, she can enjoy all the credit, while I can take the brunt of any backlash and take on any troll (you know who you are…).
Now that we’ve cleared that up, why not go and have a crack at the people who deserve it, not me, so I can now get my focus back on what really matters: raising awareness!