233. Stuck Places, Other Spaces

Since interacting with the wider non-autism centered world is often so dicey and draining, my recent reflections on said interactions have helped me gain a lot of perspective, including on past experiences from before we became parents.

What I mean by this is: I think most of us don’t get raised to be good at talking stuff out. In Asian cultures, if you even accidentally jump over the hierarchies already in place, your perceived disrespect puts an end to any listening the other person would normally have indulged you in. So even if you have a great argument to make, too bad so sad. It will be like you are invisible. No one need grapple with your ideas if they can’t see or hear you. Very mature and elder-appropriate, no? Insert tired laugh here.

By hierarchies, I mean things like youth not wanting to follow certain oppressive family traditions; a woman disagreeing with men; a racial or caste minority calling out bias overtly; a junior at work correcting a boss; etc. If at all change comes, it comes from indirect action and speech, and we are mostly asked to be content with crumbs, and symbolic gestures.

So when the stakes are high, what are our options? What if we cannot afford to wait until everyone who is “above” us has a light bulb moment? And this concern is exacerbated by moving to western countries, where people, whether they admit to it or not, expect deferential behavior from Asians. Do we just allow situations to drag on? Too often, any way we act will be compared to a different Asian person who knew how to work the system, and we will be told to learn from them. Do our disabled children catch no breaks until our spirits are completely broken down? And until we learn to approach with the perfect blend of assimilated confidence and racialized deference, how do we live in a world with no tolerance for the actual manifestations of autism?

People are really good at their own sideways tactics to avoid call outs too. For example, we are asked to see residential, religious, and cultural spaces as our community, and contribute our labor and ideas to said spaces. Okay. But when we do, and find we cannot thrive where disability injustice and exclusion are the norm, and symbolic gestures are held up for praise, I have heard this seemingly innocuous question a million times: Where is your actual community, though?

So…this isn’t a space for me because it has issues and I tried to make it more livable for my family? The buck passing is an art form. And it is meant to shame us for NOT having any community that can try to be what we might need, even just a little. It gets so easy to internalize that shame, I have even lied sometimes and pretended to have some other magical community so that people will stop causing me pain.

I imagine this shaming is not necessarily coming from a place of ill will. It might be that people genuinely believe there to be more ample resources somewhere else. It might be that they don’t understand autism life, and how we cannot be running all over the state trying to cobble together a sense of not being entirely alone. But…It might also be that people are truly surprised by the idea that we don’t see our kids as lesser beings. And that is the core of why ableism persists: Please go away to your Other Peeps so I don’t have to feel bad anymore. Please stop asking for the moon. Please spend my tax dollars on the gifted and talented kids. Please reward the excellence my own child is capable of. Please just stop expecting me to see your child as being on par with mine.

Please stop asking me to change.

Because we cannot rely on the spoken word in our house, there can be no such easy assumptions. If I am teaching something to someone, I have to start from basics. And this is how and why autism parenting has helped me put the past in perspective. I think, even when people have shifted and grown, they forget that the rest of us haven’t had a chance to track or be let in on that growth, so we are asked to applaud results, but we don’t know what the actual changes have been.

Why is the journey so obscured? Among many possible reasons, I think people have a lot of shame about the wrongs they have done. So they work on themselves in the shadows. I get that, and have no issue with that. It’s just another manifestation of ableism, where we can’t ever appear imperfect to outsiders, so we have to hide our flaws and emerge only when the transformative work has been completed. The day we understand that this is what connects us to the poor treatment meted out to the disabled, that is when the shame will stop flooding and damaging everything.

But when others have been ignorant of the journey, how do they know you can now be trusted? They don’t. So you have to be willing to have some minimal conversation to establish what changes you have worked on. Not doing so is fear and arrogance, and the excluded person or family will be justified in continuing to avoid you/your organization in perpetuity. You can hardly expect others to trust in you when you cannot even be vulnerable with them.

Let me give a simple example to illustrate. We recently left our old dental practice because they were uninterested in helping us maintain Covid prevention protocols. But the last visit I had there, the talk turned to a problematic wisdom tooth which is not simple to extract. The person working on me asked, “Has anyone ever suggested X technique to you? This needs to come out already.”

WHO? WHO WOULD HAVE SUGGESTED IT? I have been seeing you guys for twenty years! You were the people to whom I would have listened if you had made this suggestion.

Where is your Other Community…

But what they were too wary to say was this: “We have come across some new information that might make extraction finally be an option. Let’s send you to an oral surgeon for evaluation.” Instead, they made it seem as if the suggestion had been made, and I had ignored the risk of prolonging the tooth’s existence in my damn mouth.

Everyone is scared of looking bad, so they ask about our Phantom Spaces. I am very tired of it. But I am writing about it because I want to be free of other people’s fear and shame and inability to take on even the most minimal level of accountability.

An autism-specific example now:

Years ago, when A was first being taught to use a speech app, we were asked to ignore his attempts to verbalize, and direct him to the app always. I remember asking wasn’t that disrespectful to his desire to use his voice, and was told that we could intuit his needs as his parents, but outsiders needed to be able to understand him, so no.

Fast forward to 2023. For several months now, we have been getting reports of A reacting negatively to app usage, breaking iPads etc. Ergo, school has decided to allow for verbal efforts again, and have the app be a last resort option. Erm, we have been doing that in our house all along. But school a) didn’t recognize that nuance as an option until A started “being aggressive;” and b) they won’t now come to us and say Well, he’s older now, so we have to be more respectful of what he actually wants.

They like to come at us with goofy phrases like “multiple communication modalities.” 😉 I managed not to laugh as I said, “Well, the app-only strategy worked until it didn’t.” And per usual, I watched people skip hastily over the past years to “Well, we have a solution now.”

Now don’t get me wrong, it’s not like I go around exclaiming “You’re skipping steps! and asking us to conjure up mythical other realities!” I just wanted to say it here because it makes me sad. People would rather be right than trustworthy. And my kids can’t wait for you to work on that. They’ve dissociated through enough of their lives because of your stuck places.


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