What do you see?
Yesterday morning, I read a blog post that set off an avalanche. It started slowly at first, an “Uh huh,” followed by a “Yes!” and then building to a crescendo of “Oh my God, that’s IT!” Before I knew it, thoughts and emotions that have been building and building came thundering down the mountain and there was nothing to do but give in – to the overwhelming power of the truths — the big, fat, even painful truths — that had been taking shape in my head — to which someone else had miraculously given life.
In her post about a prompted typing session with her mostly non-speaking daughter, Ariane shines a light on a basic, if terrifying reality — if a human being can’t DEMONSTRATE their knowledge in a way that is understandable to the majority of other human beings, well, we (the majority) feel just fine assuming that they must not HAVE that knowledge.
I’ve talked a lot these last few days about empathy. About the vast difference between the EXPRESSION of empathy and its very existence. And the fact that an *apparent* lack of the former does not negate the latter.
I’ve been gnawing on it for days. Worrying it like a thread between my fingers. I haven’t been able to let it go. And I still can’t.
I can’t let it go in part because perseverating on stuff like this is what I do, but mostly because, at its core, this is an issue of my daughter’s very humanity. Because truly, if we are able to convince ourselves that if autistic people are unable to DEMONSTRATE empathy to us in a way in which it is recognizable as such TO US, well, then they must be devoid of empathy, then we have effectively dehumanized autistic people. Go us.
And it’s funny really (in a not funny at all kind of way) that we talk so much about the inflexibility, the rigidity of those on the autism spectrum when really, isn’t it US, the so-called neurotypical population, who are stuck in this frightfully narrow rut of perception? Isn’t it us who insist that Autistics conform to our version of .. well, everything? Isn’t it us who are really so rigid in our thinking as to be capable of believing that other ways of processing / thinking / communicating / experiencing are wholly invalid? That’s pretty remarkable (and, in its practical application, horrifying) stuff, isn’t it?
Ariane’s post took me right to the crux of it – this difference between having / experiencing / knowing / feeling and comprehensibly expressing. And all that our insistence on the latter as proof of the former implies.
If you found yourself in a Bantu village in East Africa tomorrow and someone asked you, in Swahili, to tell them a bit about yourself, could you? Even if you could somehow discern what they were asking, could you find a way to answer them? How? Might you try speaking reeeeeeally slowly in English? Gesturing? Drawing?
And if not, if you couldn’t find a way to express yourself in a way that made sense to them, would that mean that you didn’t know who you were? That you had no sense of self because you couldn’t find a way to make yourself understood?
And following down that road, does an inability to convey your thoughts in a way that NT people can discern mean that you don’t *have* the thoughts you have? How about feelings? Empathy? Knowledge? Self-awareness? I’ll take a stab at those if you don’t mind … No. No, no, no and hell no.
No more than not being able to speak Swahili means that you don’t know who you are.
I recently came across something that I wrote in 2010. When I read it, I winced. I was embarrassed by it. I even thought, momentarily, of taking it down. But I didn’t. And I won’t. Because as I’ve said before, I don’t and won’t scrub this blog clean. It is what it is – an honest, and sometimes ragged and raw, representation of the evolution of my understanding of autism. And, I dare say my evolution as a mother, a friend, a citizen and a human being. Funny how the latter follow the former, isn’t it?
The post was about Christmas. It was about Brooke’s first successful visit, at age seven, to Santa. It was about her wanting to bring her list to him and her asking him where his lists were when we arrived. It was about what I *saw* as her first active participation in Christmas.
The words that I wrote served as a caption for a picture of her sitting with Santa. It looked like this ..
Brooke and Santa, 2010
(In so many ways, my baby’s first Christmas)
I am so sorry. To my girl, to everyone else who thinks and processes and communicates and PARTICIPATES differently. I’m sorry.
I’m sorry that I looked through a rigid, inflexible lens and that I allowed myself, with eight careless words, to effectively dismiss six Christmases – the six wonderful, special, momentous Christmases that came before that one.
I’m sorry that I would be so audacious as to imply that my girl’s participation was only valid, only real, only meaningful, if it happened on MY terms. If it included sitting on some stranger’s lap and making a list of things – for God’s sake THINGS! – that she wanted. I’m so sorry that I could ever have been so blind.
Three weeks after I wrote that post, I wrote another, very different post. One in which I had begun to see the folly of my perception. These were my words …
But the other night there was a hint at something. Something big. Something that knocked me on the head and reminded me that I have been looking at my girl through MY lens. And forgetting to look at the world through HERS. And that if I had been looking through hers, I wouldn’t have been able to forget that there’s always, ALWAYS, a whole lot more than what I THINK I see.
Later that night we lit her tree before bed. As we snuggled together in the warm glow of the lights, it hit me.
Brooke knew all along. She GOT it all along. For the millionth time, I was the one who didn’t get it at all.
I hope that when, God-willing, my girl reads Diary in years to come, she will forgive her Mama for stumbling. I hope that she will understand that I was – that I am – that I always will be – a work in progress. I pray that she will see that I’m trying hard to overcome years and years of programming – of ideas so far ingrained that I barely knew they were there. And I hope that she will know that she was the one who helped me do that – to peel away the layers one by one and to find the humanity below.
Thank you, Ariane, for starting the avalanche.
P.S. There’s a butterfly in the photo at the top of the page.