On PKN and "disability awareness" (Or: Just say no to awareness.)

Pertti Kurikan Nimipäivät, or as they are internationally known, PKN, will be representing Finland in the upcoming Eurovision song contest. The contest is a big deal (alright, for Europeans such as me) and the fact that all of the members of PKN have an intellectual or a developmental disability is too. 

A big fucking deal. Totally. No doubt. PKN was chosen to represent Finland by popular vote. And this was no pity vote either. These guys fucking kick ass.  

In the nail-on-the-head words by PKN [my translation]:

Päättäjät sulkevat ihmiset suljettuihin huoneisiin
Mutta me ei haluta olla niissä huoneissa niin
Kukaan ei huolehdi meistä, ei tuu edes niihin huoneisiin katsomaan
Miten meidän orpojen niissä huoneissa käy?

CH: Päättäjä on pettäjä
Pettäjä on päättäjä
Kun ei meistä kehareista
tippaakaan välitä

Those in authority lock people up in locked rooms

But we don't want to be in those rooms so
No one looks after us, doesn't even come into the rooms to see
What happens to us orphans in those rooms? 

CH: Those in authority deceive
Those who deceive are in authority
When they don't care about us intellectually impaired at all 

This is not awareness. Not a chance. This (and most of their other work as well) is revolt. This is fighting oppression through art. This is being angry at a society that excludes. This is mayhem in the service of a greater good. This is protest.

PROTEST.

NOT fucking awareness.

We must listen to the message, not try to make the messengers fit our agenda.

Really, if we take this act of assertion and let it become about awareness (as in: Hey, a man with Down syndrome plays drums just fine and is playing at an international song contest. Busting expectations there, buddy!), we're squishing ALL of the delicious juice straight into the trash and offering the world the driest, most inoffensive part of it all -

"Disability awareness"

SCREAM!

Seriously, and I don't know these guys personally and have never even met them in real life and have only followed them since they emerged on the scene of 'what we Finns like to be proud of i.e. the education, prison system, lakes and forests, being honestly strange, and Pertti Kurikan Nimipäivät and their no fucking apologies tack' so I'm only assuming when I say that I really don't think PKN has 'inoffensive' as something they'd like to be.

Just guessing, but yeah. A pretty good guess, right?

So let's just nip this whole awareness bullshit in the bud and respect the band and the guys in it for what and who they are.

PUNK that FIGHTS THE SYSTEM.

[video of PKN performing I hate the world at a festival]

Free our people. 

Why I'm not in love with The Mighty

I have been getting an ad pushed into my Facebook feed a lot lately. That ad has been telling me that I "don't have to face a diagnosis alone." That ad is for The Mighty, a new-ish, fast-growing, and highly professionally built website.

Now, you might wonder, as I did, what my diagnosis would be. The closest I've come to a doctor in the past three years is trying to convince the US government that they should let me stay by getting a few vaccine boosters. I swear. So, as you might have guessed, The Mighty is not actually referring to my diagnosis (seeing as I have none), they're referring to my kid's diagnosis of Trisomy 21, Down syndrome.

Ah, of course this is about my kid, a minor, not me, a consenting adult.

This is about my family - my husband and I - and how we must struggle because the person who started The Mighty did:

"Lying in bed that night we were shaken and lost. This was not the life or family we had planned. I remember feeling small and hollow, a powerless husband and father. Whether it was a futile attempt to comfort my wife or a way for me to make sense of it all, I told her that we were going to do something good with this. How, she asked. I had no idea. We were in tears."

It is clear that there are no evil intentions behind The Mighty, just an attempt to make sense of a very personal situation, of one person's circumstance. However, should that mean that a powerhouse should be beyond criticism, because the intentions are benign and in accordance with one person's understanding of "doing something good" with a situation they didn't want to find themselves in? I don't think so. Of course not.

What does The Mighty aspire to? They write that they "...joined forces to build The Mighty because we all believed that a media company could be more than a business. At its best, it could actually help people."

Noble, you might think. Seems like something that could be good, right? But what does "helping people" entail in the world of disability? Who do they want to "help" and how? Why are they telling me that they don't think I should "face a diagnosis alone?"

Who is The Mighty for? When do we cross the line to inspiration porn aimed at the non-disabled, non-marginalized audience? Is it okay, as a non-disabled person, to want to feature

"Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability."

Where are disability pride, disability culture, and creation of new value in "facing disease, disorder and disability?" Where is empowerment in "improve?"

They're not there.

As far as changing the path of someone's day, that happens to me most every time I come across an article, especially about Down syndrome, being featured on The Mighty. I come away from the encounter a little more defeated and angered, and feeling like I continue to bang my head against an ableist wall of inspiration. But that's just me.

Come on, the site's harmless and at least it's not disparaging and filled with hate (unlike you), you might be thinking, but hopefully aren't.

Is it though? Is it harmless to keep the grief narrative alive and well and more powerful than ever? Is it harmless to center the parents, the family, as opposed to the disabled person themselves? Is it really harmless to tell a new parent trying to suss out whether they're truly grieving a diagnosis or simply concerned about how their kid will fare in the world that is not designed for someone not considered typically developing, that it's okay to cry and grieve the "child they lost" and to let no one tell them they shouldn't? Not harmless in my book. Seems rather damaging for a kid who is everything but "lost."

Is this a site for suddenly disabled adults looking for community and "facing a diagnosis?" Doesn't seem like it. The majority of the articles featured seem to be written by parents of differently disabled children. To The Mighty's credit, however, I feel I must mention that there are articles written by disabled adults. They do exist on the site, they do. They are not the majority, and I'm not often sure what their purpose is, but they're there. So who is the site for then? By the looks of it, it is targeted to the non-disabled parents of newly born disabled or newly diagnosed children.

So. This is not a site for or by disabled people. This is a site about disabled people. About someone other than themselves coming to terms with their diagnosis, or sometimes seems like, their existence.

The Mighty could be so good, so empowering. There are inklings of this. I hope they refocus and redefine. I hope they become less satisfied with themselves and their general crowd appeal of feel-good and glossy, and truly help create something new.

With, not about.

I don't ask for much, but I do ask this: Do not pull the rug from under my kid's (or her peeps') feet. Just don't. There is no grace, love, or acceptance in something that ultimately hurts her.

As long as we keep centering the parents, the families, regardless of how good our intentions are, we are not creating strong advocates with their own strong voices, and their allies. The disabled voices remain erased, no longer buried in institutions but nonetheless largely drowned out by those who mean well.

We can do better. I know we can.

[A photo of the back of a blond child's head with slightly blurred metal chains in front of the child] 

Free our people.