Resources for neurodiversity Resources to tackle privilege

Beginning to undo internalised ableism by Sue Johnston

We put a call out for resources around neurodiversity to support neurodiverse people in the NVC feel valued and a sense of belonging and to support neurotypical people learn and grow in understanding. Here is one response.

Beginning to undo internalised ableism

Sue Johnston

“So much arising in me. Deep gratitude. And deep sorrow that I would feel so grateful.That this could look to me like a big step, simply because it actually makes neurodivergence a hint more visible in one small place, when ableism is so powerfully alive and well, barely challenged, at such enormous cost to us all. And our community is no exception.

I’ll name one of my wonderings.

Marshall’s 40 word rule. Utterly beautiful. And structure and limit is GREAT for an ADHD brain. And what about when that brain has flipped into a supersonic hyperfocus monologue? What does it cost that person to be kindly interrupted because you are bored? How long after your interjection will they have finally recovered from the shock of smashing into a brick wall?  The kind of shock that has already happened a few times that day perhaps? A shock likely invisible to you, or were it visible, incomprehensible, maybe to the point of incredulity. Alien.  So the voices in the workshop continue, like feint fuzzy echoes in the distance, as they try to find their way back into the room, into the subject, way behind now so maybe confused. Maybe ashamed. Again.

If you ever interrupt in this way, do check how they are afterwards? 

Do you think they could answer honestly, when they’ve always been told they are exaggerating, that the experience they have just had doesn’t exist? And so now, that’s still what they believe, even as the experience shakes them again to the core? They unconsciously know that their task is to keep quiet and not disturb the nice normal folks anymore than they already have done. 

I’m used to being the nuisance, causing a scene, holding people up, taking more than “my share” of space, being told as much, often kindly. Used to being the frightened silent one who dares not speak for fear of getting it wrong again. We’re talking terrified here. (Which I now realise  is why most of my empathy guesses for a good long while centred around fear!). I’m familiar with being too much. 

I’m not claiming to have any answers. I only got to understand the gulf between cultures by remarkably good fortune and by dogged determination to survive in a world that doesn’t meet my kind where we are, but instead consistently expects us to meet it, in it’s manner. I know how lucky I am to have survived long enough to be identified (not diagnosed; I’m not ill). Many don’t. I know too how lucky I am to get the chance to begin to undo the I internalised ableism in this one human here. To see now so much more clearly the extent of the diversity of human minds.

And my heart breaks for all those attending NVC  workshops who come away with their difficulties compounded by ignorance. It’s real. It matters. 

Please remember, there are quite possibly neurodivergents in your workshops who have no idea  that they don’t experience the world in the same way as everyone else, don’t know that they think differently, that in some ways their brains cannot do the same things as neurotypicals. 

Or if they’ve managed it, it takes masses more effort to achieve the same outcome. They don’t know that their suffering and that of those in relationship to them may well be created less by their disconnection from their needs; and more by daily misinformation about what needs their behaviours and emotions actually point to.

One small example. I used to cry a lot on empathy circles when I first came to camps. Many people liked it. They said it helped them access their emotions. So I would deliberately go first to help people. It felt like a responsibility. Many neurodivergents work that way; wired to put others first. But it could be invisible. Maybe it looked like lack of consideration to some. Sometimes it probably was.  I imagined that this was some kind of skill.  But what was invisible to me, and those around me, despite the tears, was just how distressing it was. How surprised I often was to find all this pain in me over something I hadn’t thought was a big deal. But I’d heard the psychologised explanation that I was in denial; and I’d heard the NVC explanation that  I’d been disconnected from my emotions/needs til that moment. And, being autistic, I’m wired to trust, accept, take literally. It makes me vulnerable. I would unconsciously disregard the extreme angst in my body afterwards, believing it was just a sign that I had “processed deeply”, and it was all good. After all, I’ve been systematically trained to deny my symptoms. The empathy did give relief in some ways, of course. But I do wonder now, whether far from offering relief, it often reinforced my inability to know myself.  

And another thing I’m aware of. Exposure anxiety. 

It’s an autism thing. I will often cry intensely when I speak, even if I want to say something brief and trivial. It really isn’t necessarily to do with the content of what I’m saying at all. When  I hear my voice it can freak me out, I’m overcome with such pain throughout my body. I didn’t know that those sensations weren’t something everybody had to contend with, that I wasn’t just  less self disciplined. So when empathisers linked my tears to my observations of my life…assumed remembering was generating emotion… It was supporting me to prolong the agony created by the current situation. And I’d crack on on my quest to be normal ( some hope! Laughing a lot!).

Tragically, people can’t ask for the accommodations they need, because often they don’t even know that society disables them. 

What accommodations could you make? Well, I wonder myself. We’re all so different. Think in terms of someone who keeps trying to walk up the steps and falling down them, unaware that their legs don’t work like other people’s, and that ramps and wheelchairs exist. And when they eventually think to tell  an able bodied person about their problem, the response is, ” I know what you mean, I have that problem, I just do x”, so start trying and failing all over again.

If you made it thus far, I’m super grateful.  May it be that it serves your continued open heartedness and curiosity. So much in life is mystery, and it seems proper that we respect that.

In warm gratitude for this amazing life,  neurodivergence, and this community.”

June 2021