A lot of organisations and countless personal blogs have used those words when advocating for Down syndrome: negative, outdated, stereotype, perception. They definitely appear in quite a few of my blogs, for sure. Because it sounds great, it sounds like the right and logical thing to do, to weed out the negatives so the positive can thrive and flourish.
See, I’ve been reflecting a lot lately about what it all means: negative perceptions, outdated prejudices , outdated stereotypes. Where do they originate from? A list of shortcomings set against the mainstream? Let’s see: Tongue sticking out? Can’t talk? Challenging behaviours? Toileting issues? They will wreck your marriage? They will ruin your life? Their siblings will suffer? Complete lack of abilities? They will be a burden? Short life expectancy?
I believe it’s all of the above and more, it’s not an exhaustive list, unfortunately.
In the past, not many of our children had a shot at proving society wrong. As a matter of fact, everything was nicely geared up to provide evidence that they ticked all the boxes of the above list: institution, no family, no love, no education, no health care, no therapies, no input whatsoever. Talk about setting someone up for failure and a perfect example of self-fulfilling prophecy! That’s when the damage was done, though. The “evidence-based” medical books and papers were published with all the “relevant research, studies and findings” and passed on to medical students, to generations of medical practitioners who have themselves to this day passed on their “expertise” to parents.
The truth is, WE all know how warped and short-sighted the initial findings of those studies were. It’s easy enough to see how far our children’s potential can come in all areas when they are given the care they need and how loved they are by their family.
We have certainly excelled at mirroring the mainstream template of worthiness by mainly focussing and emphasising mainstream-like abilities.
The thing is, with our laudable, necessary, relentless and highly successful endeavours to prove that list wrong, for each item ticked off, another one was instantaneously added to the newly-created NOSP (Negative Outdated Stereotype Perception) list. We blinkered in the process a significant segment of our community. A segment of families who, in spite of having every known therapy thrown at them do tick boxes of that damning list, a segment of families who feel like a constant reminder of what we’ve been trying to delete from medical text books and doctor’s rhetoric. They were sidelined by their own community out of necessity, for the greater good, no doubt. And they also learned to keep out of the picture and remain as discreet as possible not to upset the apple cart, not to jeopardise all the progress made thus far. Hence the divide was born.
The thing is, as we rightfully keep hammering the mainstream, words matter, language matters.
Nobody wants their or their child’s feature(s) or condition labelled negative or a thing of the past. They are current and very real for hundreds of families.
While it is understood it was the price to pay for the first stepping stone towards acceptance by the mainstream, it’s now turned into an unconscious bias and even internal ableism. Maybe that’s why a few people from our community reacted so strongly last year when we tried to be inclusive and introduced a cartoon character with Down syndrome for an upcoming children’s book with a tongue sticking out. Imagine the wrath had we dared add a feeding tube or a diaper!! … Again, parents whose children live like that cartoon character sadly didn’t feel they could publicly speak out, they felt vindicated and all we got were private messages.
The question is, do we want to fix this? Can we fix this?
I believe we can. I believe all we have to do is tell the truth and the whole truth through that lens of love when advocating for Down syndrome, to the mainstream, expectant parents as well as new parents not just because they all deserve it but because if we only show them a partial truth we are as guilty as those medical professionals who often only portray a partial truth too. Balanced information. The whole spectrum.
We just need to stand up for all, unashamedly and unequivocally
When we know better, we really must do better. (Yes, I do love Maya Angelou).
pps: this post was written following the traction of my other blog post https://troynize.com/2021/07/09/my-mistake-my-bad/