When I first started to advocate for people like my daughter, I made a very big mistake.
By advocating mostly on how able they can be, I was amalgamating worthiness with ability and hence relegating all those in the Down syndrome community who are not so able, who present with medical comorbidities or a dual diagnosis to the remotest and darkest corners of the background . I was being unknowingly totally ableist, insensitive and short-sighted. It was a bit like “look at how wonderful my daughter is, she can do this and that, why on earth would you not want babies like mine?” type of narrative. I thought I was doing my community a big service! I thought I was looking at the big picture.
But actually, with that type of framing, the mainstream always come back at us through the biggest and undeniable loophole: “Not all people with Down syndrome are that able and that independent “.
And because I had made the mistake of associating ability with worth, I was further perpetuating the longstanding perception that lack of ability therefore means less worth…
I have learned since that this ability=worth narrative is extremely damaging for those with Down syndrome who really struggle in particular as well as for the Down syndrome community as a whole.
I have learned that the way 47 chromosomes affect an individual is just as complex as the way 46 chromosomes affect someone. Either way, you end up with a very wide spectrum of abilities, personalities, and potential.
I have learned that it would be extremely disingenuous to tell parents expecting a baby with DS that their baby will most likely be able and independent. What if it’s not the case?
I have learned that it is imperative when raising awareness to stop focusing on abilities and use the lens of love instead so that all our children can be on the same footing within our own community but also because while we can’t guarantee expectant parents that their baby will become a very able and independent individual, we can promise them that they will LOVE that baby regardless. No more insidious ableism, no more loophole…
I have learned that when you know better, you do better…
P.S.: And just to clarify, absolutely if your child is able and talented you should shout it from all the rooftops, I do that for Kathleen all the time! We should always be proud of our children’s achievements and share them, whatever they are! What I’m saying however, is that it’s wrong when advocating for Down syndrome to only represent the segment of our community that is the most able. I would call it misrepresentation, lack of representation and ableism from within our own community. And it needs to change because I’m tired of seeing my close friends in tears from feeling left behind and ignored. We can’t ask the mainstream population to hear us out if we can’t even listen to the same claims from within. That’s all I’m saying.
I knew there was a divide in our community but I was wrong yet again: I’m pretty heartbroken that it transpires from the hundreds of families who have come forward in all the comments across all social media platforms, that we are in fact dealing with a chasm instead, and not just in the UK but all over the world. Feel free to check: https://www.facebook.com/667774125/posts/10161254899534126/?d=n
I wish I had a solution to close that gap, but perhaps we could start by asking all Down syndrome organisations worldwide to be fully accountable for the very same thing they are demanding from the mainstream world: a full, diverse, fair, balanced and PROUD representation without tokenism of the whole spectrum that is and always will be Down syndrome, not just the segment that will appeal to the mainstream population or expectant parents or new parents.
And when I hear well-meaning parents that sharing the more able and palatable ones is a means to an end to counterbalance the outdated stereotypes (they’ll never walk, they’ll never talk, they’ll never be toilet-trained, etc…), well:
1/ what do you think the world sees when they suddenly encounter someone with DS who doesn’t fit the profile the community has been projecting for years?
2/ how do you think a family with a child with complex needs feels when they are never represented for fear of bringing a bad name to their very own community, a community that is supposed to support them?
3/ how do you think it feels to be considered collateral damaged for the greater good because you present with what is perceived as an outdated stereotype/feature with your tongue hanging out or still not walking at 5 or still not toilet-trained at 15?
Food for thought?
And don’t hesitate to share thoughts on how we can finally make all those families feel welcome and an integral part of our community.
From our small and very humble platform, we tried and thought we could perhaps share a poster to support the families who have felt like outcasts. It’s not the panacea, but hey, it’s better than nothing and it’s a start!
If you want to also show them your support, follow this link and grab your poster, whatever the condition or the ability of your child/yp (you can use a still or a video): https://tinyurl.com/9jm5kz8v
“Let’s embrace complex needs. Keeping them in the shadow hasn’t helped curb those termination rates, has it?” – https://troynize.com/2020/10/19/downism
📣 I am pleased to announce that following the traction of this post, key people have reached out and we now have an international collaboration working behind-the-scene on a project to address the lack of representation and redress the balance. We shall keep you updated.
📣 In the meantime, https://makingchromosomescount.co.uk/about-us/ would like to show our humble support to all the families who have commented, and gift them with a copy of the latest issue of our magazine while stock lasts. All you need to do is email your details to firstname.lastname@example.org using the code SUPPORT
📣 Make sure to keep an eye on the next edition which will cover this issue and feel free to email your story about lack of representation or anything DS related to email@example.com.