a mother who gets it

On this thread, a commenter from ballastexistenz wrote:

When Ben was in second grade, I remember him spilling water on the bed. Rather than tell him to go get a towel, I decided to just watch him.

He left the room, came back, felt the wet bed, left the room again, came back, sat down, and felt the bed. On the third try, he got a towel and soaked up the water with it.

I remember thinking at the time, he must do that hundreds of times a day, and told his teacher about it. It was no wonder it took him so long to complete a paper…one of his diversions was to look through his book. The teachers could never understand why he did this.

Strangely, when he was in his resource room with a teacher he loved, he had no problem completing vast quantities of work. This same teacher felt it more important to get to know his children before asking anything of them. He also cleared out a place for Ben to sit, and made no demands of him.

I thought this was amazing - this tiny little story illustrates so clearly that what most of us need is just to be left alone, to find our own way in our own time. And that given the right environment, most of us can do amazing things! They may not be amazing in terms of what some other person can do, but they'll be amazing in terms of allowing us to make the very most of our own ingrained capacities, to explore those capacities to their very limits.

Why is it that so many people don't get this? Why do people always interfere? Either by getting in the way of a thing happening, or by trying to force something to happen that isn't meant to? Maybe it's because those people themselves were never allowed to flourish in an environment that supported them properly. So they're still trying to make up for lost time by intervening in the processes of others?

And another comment from another poster, in the same comment thread:

I don’t understand people. How can they be so incurious that they never discover things like this? How can they not want to know? How can they not want to understand? I’m beginning to agree with the assertion of many autistics: Neurotypicals are freakin’ weird.

I totally agree. Not just about autism, but about dang near anything you care to mention. NTs seem maddeningly incurious about the world as it exists beyond their incredibly narrow definition of 'normal'.

A quote from a CNN interview with Amanda from ballastexistenz, Living With Autism in a World Made for Others:

And what does Amanda think is the hardest thing about living with autism? "Having to navigate a world that is, on all levels, is built for the abilities and deficits of people who are not built remotely like me."

Though I don't think I'm autistic, I feel that I relate strongly to this comment - it feels as if the world is made for others who perceive the world much differently than I do, and that I spend most of my waking energy trying to figure out how to fit in well enough just to manage to do the very simplest of tasks. Sometimes the energy involved in 'passing' is so overwhelming that I can't be bothered - rather than go to the grocery store, I'll scrounge around for that last can of tuna or eat an entire package of crackers just because that way I won't have to spend hours preparing myself, mentally and physically, for dealing with what feels like an onslaught of unwanted interaction with strangers. I try to go to familiar places with friendly faces for just this reason, even if it means going quite a bit out of my way to do so. The 'reward' of a smile from a familiar acquaintance makes the hours-long preparation for leaving my safe 'nest' worthwhile.

When I refer to 'passing', this is both in terms of stifling/supressing most of my normal (natural to me, instinctive, automatic) ways of being and the fact that I don't like having to work so hard to conform to the expectations set for women in terms of appearance. It's exhausting. By the time I've managed to jump most of those hurdles, I'm often so tired I don't even want to leave the house.

But this also reminds me that sometimes we define normal by being who we are - that by just insisting that your own way is perfectly acceptable (as long as it's not actually harming other people), you can sometimes get people to accept you and broaden their definitions of 'normal' just because they've finally got used to you being the way you are.

***
It occurs to me that this points up the whole power dynamic I was trying to get at with the previous post: Power is generally defined as our ability to get others to do what we want. Being allowed to be the way we are and not being forced to conform to others comfort zone expectations is a reflection of power, too: Our ability to persuade others to leave us alone. Often, though, this has nothing to do with us, per se - it's more about the other person's curiosity, openness, and resonance with some aspect of something they see in us. People are open to 'odd' behaviors when the person doing the behavior somehow reminds them of themselves...

In which case the power isn't inherent in the person with the 'odd behavior'; instead it still resides in the person doing the observing.

Which again argues for the idea of, "Just be yourself as hard as you can."

***
Found yet another quote that I want to keep track of - not sure this is quite the right place for, but here it goes. Yet another one from ballastexistenz, quoting from someone called Lady Bracknell's Blog:

The problem for us crips is that almost all impairments are an extreme form of something which everyone experiences at some time. Which means that they think they know what our lives are like. Either because, as in the example above, they are so much the centre of their own universe that the concept of there being anything they haven’t experienced is inconceivable to them, or because they can’t understand experiences which are outside their own frame of reference. (Which is where the, “Well, she can’t be in very much pain if she’s laughing that much” reaction comes from, I think.)

Once a year, as a result of my diabetic retinopathy screening test, I spend several hours with my pupils artificially enlarged, which means that I only have peripheral vision, and that the light hurts my eyes. This does not entitle me to contact my visually-impaired friends and colleagues and tell them I know what their impairment is like. I don’t. I know my vision will be back to normal in a couple of hours. I lie down in a darkened room until that happens. I take time out from my daily life until I can see again. I don’t have to develop strategies for every minor task so that I can complete it safely with restricted vision. The only thing I have learned is what the view is like when you have no central vision.

Reminds me to be careful in comparing myself to what I'm reading on ballastexistenz' blog. I find I resonate far more to what she writes than to what I see on many other blogs - as one of her commenters wrote, I feel more at home there. But reading the CNN articles, I realize that if I actually met Amanda, I might have a totally different sense of whether I resonate or not. I keep thinking I'd like to go somewhere where I can see and interact with some people who identify as autistic, to see what it feels like. To see if I feel some resonance or not. Because right now I don't feel like I really fit completely into either world. And I don't feel any great need to acquire a 'label', either! But it might help understand the struggles I deal with trying to cope with the world of so-called 'normals'.