You see, we feel a bit confused, befuddled even. Here is why (and please bear with us):
1/ People with Down syndrome are raised in families now instead of mental institutions. Brilliant! So, logically it means they are now deemed as worthy by their loved ones, right?
2/ They are finally given free and indiscriminate access to health care. Fabulous! So, logically it means they are now deemed worthy by society, right?
3/ They are at long last given free access to education. Hurray! So, logically they are now deemed worthy by the government, right?.
And yet, many a times, they’ll turn the radio or the TV on, or leaf through a magazine, and BAM!, it’s in their face and ears, again: debates and endless arguments on how wonderful it is that soon there will hardly be any individuals like them in the world thanks to prenatal testings, WITH TOTAL DISREGARD to the fact that, hello?, they (and their relatives who absolutely adore them, by the way) are here, they can READ, they can FEEL, they can HEAR you and more and more of them actually UNDERSTAND or get the gist of what it’s all about!!! How would it make you feel to have your own worthiness being debated (usually negatively) publicly, right , left and centre, with no recourse to defend yourself, with most either shaming your parents for choosing to have you (and wasting tax payers money) or feeling sorry for them (not believing for one second that they are actually as happy as you are). Truly, how would it make you feel, that, actually, nobody really cares how you feel about it?
Wouldn’t that sound like the epitome of hypocrisy to you? A blatant betrayal, a tad disorienting when you’ve just been told for the past 20 years how wonderful you are???? How the heck are they supposed to reconcile the fact that you are building them up to the best they can be, only to understand later that actually you believe the world would be a lot better off without them?
You tell us, because, yes, we are confused, and so are THEY! Wouldn’t you be?
Are they too loving? Too sweet? Not clever enough? Too slow? Take too long to deliver? Too many hugs? Prone to drugs? Prone to alcoholism? Prone to delinquency? Prone to crime? Cost too much?
You tell us, because as my daughter is busy walking through the gates of adulthood and getting a bit more savvy, she is starting to feel like a survivor amongst a world who wishes the segment of population she belongs to extinct and yet that same world seems to welcome her with open arms…
You tell us. How is she supposed to keep walking, proud of who she is and hold her head high?
You tell HER because when she asks me “BUT WHY?”, the only thing I can come up with that could make sense, is partly true, shields her sense of worth and just about stops me from breaking down in front of her, is: “It’s because people don’t know much about Down syndrome. I know that because I was one of them before you were born”.
And that’s when I suddenly find myself longing for the questions she used to innocently ask at different stages of her childhood: “What is DS?”, “Why do I have DS?”, “Do I still have DS?”: and I now feel helpless with “I don’t want to have DS anymore…” each time she comes across debates about abortions and prenatal testing.
Disability lies in the eyes of the beholder…
(You can follow Kathleen on Instagram @kathleenhumberstone or Facebook Kathleen Humberstone or Twitter @KathleenHumber4)