DOWNism: When You’re not Even Good Enough for Your Own Community, or…The Dark Side of Positive Representation

We have all heard of #RACISM (prejudice, discrimination, or antagonism directed against someone of a different race based on the belief that one’s own race is superior) and

#COLOURISM (prejudice, discrimination, or antagonism directed against individuals with a dark skin tone, typically among people of the same ethnic or racial group).

But have you ever heard of #Downism (prejudice, discrimination, or antagonism directed against individuals with Down syndrome with a dual or multi-diagnosis, or with more prominent features associated with the condition, based on the belief that the more able the better, the less features the better, typically among the mainstream population but also among the Down syndrome community)? It’s been happening for ever, all I did was give it a name.

What do I mean?

Throughout history, the framing of inclusion has always been “the closer you look like and behave like the majority (the one who has the power, the one who has the control), the more chances you’ll get in”.

No need to look too far back in history: we all know what the majority looks like and how long it took for its gender to be mixed and for its colour to be tie-dyed and what it cost and is still costing women to integrate, what it cost and still is costing people of colour to squeeze in (behave white, talk white, tame hair, watch skin tone. The 4 golden rules).

So yes, gender and colour have managed to drill in and fit in (to a certain extend, I know, but that’s not my debate today).

When it comes to physical disabilities, it is very much on the agenda these days, as it should have been a long time ago but let’s not dwell on that, for argument sake. It’s not a tectonic plates kind of shift but there seems to be awakenings here and there. The interesting fact is that, hard as you try, there are only so many physical disabilities that will fit that frame, there’s only so much you can do to look as mainstream as possible and there are only so many allowances that can be made for them to fit that frame, such as ramps, elevators, sign language translators, etc… As a result, there are many left behind who could bring so much to the table if only that frame would start peeling off a bit! Their main obstacle is not so much disabilitism (there are now disability rights in place as recourse if need be) but ableism, that sense of superiority from being able-bodied. (It is worth noting while we’re at it that disabilitism is very real as well among the disability community itself).

Let’s stretch ourselves a bit and take a peek at cognitive disabilities trying to fit in. Not much to look at, is there? Unless they look the part…and keep quiet!

So what is the solution? Well, how about: if the framing doesn’t fit, the framing needs changing!

How about instead of trying to fit into a narrative, we make it fit us.

Let me take you back to my communities (Autism and Down syndrome).

When it comes to how people on the autism spectrum or with Down syndrome should be referred to or addressed as, there seems to be quite a big difference of opinion from within those communities.

The autism one seems to be a lot more relaxed about it, and when you ask them (the adults on the spectrum), the consensus seems to be that they actually claim their autism and call themselves autistic woman or autistic man rather than woman with autism or man with autism because their stance is that autism makes them who they are and sets them apart from the neurotypical population and they are proud of it so why should they put it second place as if it was something to be ashamed of? That’s also what my 18-year old autistic daughter thinks (get a life type of thing, there are more important things to worry about or fight over). Maybe it is because their disability is invisible, at first, and therefore they haven’t been stigmatised as much as those with a visible disability.

The Down syndrome community, though, at some point, decided that the one acceptable and respectable way of referring to someone with Down syndrome was on a person-first basis, i.e. the boy with Down syndrome, not the Down syndrome boy. It is kind of a written rule (it is after all advised on the websites of many Down syndrome organisations) which when broken will unleash fierce and passionate reprimand from the community. Nobody really ever questioned it, it just seemed to make sense, so we all started taking it for granted that it was indeed the right thing to do.

What transpires to me is we are not as much hell-bent on a person-first basis as we are hell-bent on a condition-second basis.

The only reason I can fathom why that is, is that when the condition is stated first, we know the mainstream world is focussing not so much on the condition itself but on the very low expectations that have become conjoined to the condition. And we are right of course! But by doing so, we have created an unconscious bias to try and get into that mainstream frame.

I think I have a problem with that. I understand it was necessary at some point to make the mainstream population stop in their track and think, but we may need to start moving away from it and here’s why:

My 21-year old daughter has Down syndrome. She is not that able that she cares much whether I call her my daughter with Down syndrome or my Down syndrome daughter. I actually never had a problem with anyone calling her the downs girl or the downs woman. I usually focus more on the intent, whether it comes from a good place or not, and so far so good.

The simple truth is, Kathleen is who she is because of her condition, there’s no 2 ways about it. There’s no hiding it behind a person, it’s right there in your face! So, let us not delude ourselves, calling them person-first just makes the mainstream population pretend they can’t see the condition. What happens is that they call our children person-first but they still have sitting at the back of their head that heavy load of stereotypes. What’s the point? It’s just political correctness…

Maybe it’s because I’m a seasoned mum now, 21 years, having lived in many different countries and cultures, and not so much on the defensive anymore or trying to make sure my child is accepted in the mainstream world, but to me, the more I ponder over it, the more I would like to say that Kathleen is a Down syndrome woman who happens to love her life, not Kathleen is a woman who loves her life and she happens to have Down syndrome.

By now I’ve probably become an outcast of the Down syndrome community so I might as well carry on and make my case worse…

Downism in the mainstream world translates into a door left ajar for those with the condition who look and behave as mainstream as possible. Kathleen is a good example of that (so are Madeline Stuart, the Australian model, and Ellie Goldstein, the UK model recently featured in a very successful Gucci campaign). And we are grateful for all the opportunities she’s had until now.

Downism within the community however, could be a direct consequence of Downism from the mainstream world leaving parents with one big goalpost to raise awareness: for our children to look and behave as mainstream as possible to hopefully give them a fighting chance in this life, in a desperate bid to try and curb the ever-rising termination rates upon a diagnosis with Down syndrome, and in that process reluctantly leaving trailing behind those who don’t look and act the part as collateral damage, allowing them through the back door every now and then in a fit of tokenism, but mostly leaving them fending for themselves, and thus allowing the stereotypes to perpetuate! We’ve bought into that framing, that narrative, and we’ve done so at a heavy cost. Most parents daren’t post pictures of their cherished child who may have a large protruding tongue in spite of all the therapies, or crossed eyes/ moving eyes in spite of multiple appointments at the ophthalmologist, right next to the beautiful “perfect” cherubs featured on social media. Can you imagine then those whose child had a stroke, whose child still can’t walk at 5 years old, whose child has a dual diagnosis, whose child has very complex needs? Historically, they are largely ignored.

It doesn’t have to be that way.

It may be time to celebrate all abilities, all those legitimate characteristics we have allowed to be turned into negative outdated stereotypes.

We could begin by just distancing ourselves from the mainstream measuring tools. We can start building our very own frame of reference by embracing the condition and by that I mean embracing all of its diagnosis and comorbidities, its facial features and characteristics that come with it and be proud of them all, by building each other up, educating each other, helping each and every child to reach their own potential whatever that may be. No more discrimination between those who bear many of the features and those who look nearly mainstream. For example, let’s embrace tongues hanging out (the one characteristic I would like to read one day as “formerly known as the ball and chain of the condition) and crossed eyes that are possible part and parcel of the condition so that they stop being negative stereotypes, so that those children don’t have to feel like second-class members of their community and held partly responsible for high termination rates and viral memes. Let’s embrace complex needs. Keeping them in the shadow hasn’t helped curb those termination rates, has it? And trolls will be trolls will be trolls. Let’s stop worrying about the whispers from the mainstream world. Let’s support each other!

Instead of trying to mould our kids into mainstream to justify their worth, let’s invite the mainstream to see who they really are and how much we really love them, because let’s face it, the mainstream world is always fascinated by how much we still actually love our kids whereas they always expect us to be so unhappy and depressed and deprived and, and , and….

Let’s just show them the full picture!

I will just finish by saying that opinions evolve as we make our way through life. We are all at different stages of different journeys with the same destination. And right now, that’s where I find myself at, totally unapologetically.

#SetTheRecordStraight

#NotAshamed

#TheFullPicture

#RepresentationMatters

#ComplexNeedsMatter

#BigTonguesMatter

#CrossedEyesMatter

#AlopeciaMatters