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, they can hopefully see through this type of advocacy that we LOVE our child 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 we should always be proud of our children’s achievements and share them and shout them from the rooftops, whatever they are, I do that for Kathleen all the time! What I’m saying however, is that it’s wrong when advocating for Down syndrome to ONLY represent the segment of our community that looks the most able. I would call it misrepresentation, lack of representation and ableism from within our own community. And it needs to change because 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 damage 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 have dedicated the 3rd edition of our magazine to #ItsNotAllAboutAbilities #FocusOnLove: https://makingchromosomescount.co.uk/
“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
9 thoughts on “My mistake, my bad…”
I copied with attribution to Quora answers.
Well done you and your daughter.
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There is so much I can’t or don’t know how to say. You articulate my thoughts. Thank you.
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Thank you. I appreciate your taking the time to write a comment. Denise
Amen, sister. I am not in the DS family, but the NS family (Noonan Syndrome). But I follow other syndromes since there is so much overlap, especially for us moms emotionally. I copied the link and posted to my NS group. This is fantastic, and so needed right now. I think about our kids’ IEPs and how they classify our kids as, “he/she can or can’t”. I’m going to ponder that one long and hard: how can I amend his IEP to be a clear statement of educational needs, not ‘just how many can’ts there are or how many low scores on tests he has.
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Thank you Heather! I’ve just looked up Noolan syndrome. Had never heard of it. Thank you for educating me. Denise
I’ve been doing a lot of reading about this Down Syndrome Bill and I can see you’re doing some great work trying to get at the interest groups behind it. Thank you very much for doing so.
I do hope you, A and K are thriving! I do miss you all.
Keep up the powerful work!
I can’t tell how your lovely message jeered me up, thank you and lovely to hear from you!
The DSB is a disgrace on so many grounds but the ones behind it are powerful and extreme well connected. It went through the House of Commons without being challenged at all! It’s farcical! Liam Fox is relentless in trying to get support from Peers in anticipation of the House of Lords and is quite successful. Those politicians can’t even read the one A4 page that is the Bill , if they did they would see how utterly meaningless it is and how discriminatory it is to other disabilities, never mind the real agenda. Our voices get drowned out. We’re still fighting but what politician can resist looking good next to someone w DS and of course it’s on track for becoming a world first!!! It sure isn’t easy to go against the stream, it can be lonely but hanging in there. Thank you for your support.
All the best!! X
Wow what a brave blog to write as a parent – Fantastic blog – as we all know its not people with LDs that has created the divisions. I believe if campaigns are lead by LD people including those with DS then we would have a much more inclusive narrative. I know this from the chats I have had with some LD people over the past year or so. Why not turn your attention to People 1st and other LD people who are trying to lead by example and are trying to champion inclusive practices when we have not been involve right from the start.