From years of lighting tea light candles for our altar, I know for a fact how wax blobs just happen. The matchstick gets a bit of liquid wax on it when you’re lighting the candle, you shake the match to extinguish the flame, and that’s how the blobs happen. Or maybe that’s just our house and we’re weirdos. 😉

Our altar table, and the floor around it are wax blobby. And I don’t really chase after them to clean up in the moment because…well, because it’s part of having an altar you engage with regularly, is how I feel. Worship leaves its mark. I don’t really want to create elaborate blob-avoiding strategies that would take away the pleasure of being in the moment. Bhakti rasa flowing without externalities.

In the cold season, when we don’t have the ceiling fan on at night, I light a candle in our bedroom as well. It goes in one of those candle holders that has little cutouts, and the effect of candlelight on the ceiling is so calming and beautiful. And since A has a penchant for turning on the hallway light at night because he wants to be able to see, sometimes the soft candlelight from our room is enough for him, and we all sleep more peacefully.

But yes, wax blobs. And also, I do not care about them upstairs either. Our house has seen us through a lot, and a little bit of beauty and comfort are pleasant to have. A little housekeeping fail is also okay. As KC Davis says in her stellar book “Struggle Care: How to Keep House While Drowning,” these kinds of tasks are morally neutral. We do not need to assign notions of virtue or sin to them. Davis is also of the opinion that our home should serve us, and not the other way around. So when, for one reason or another, we struggle to get shit done (in our case, constant caregiving, and catching up on our own tasks when A is at school), it’s not somehow less perfect if we have smaller goals or we don’t do things according to the norm.

I like that worldview.

You might be wondering where I am going with this idea of imperfection carrying a neutral value. Well, we had A’s parent teacher conference the other day, and after so many years of lengthy meetings with special ed teachers and child study teams, we finally had a wonderful interaction with no automatic negative value judgments placed on our efforts at home.

Why? Because the teacher is a sibling of an autistic person herself. I cannot tell you how much of a difference that makes, this hands on, daily lived domestic experience, and most importantly, of loving the person as a family member. There were no off the mark suggestions; no assumption that we are clueless or uncaring; and no thoughtlessly cruel ideas about how to do more. We have been told so many times to “just find ways to keep A constantly busy,” as if we don’t need breaks ourselves, as if the working world allows people to check out of deadlines, and as if, if we actually did those preposterous things, school peeps would not then flip it and say “You haven’t taught him how to have unscheduled time and now he doesn’t know how to amuse himself.”

This teacher had that unconditional positive regard which can be so sustaining to parents like us. She understood instantly as we spoke what the unspoken was. How many ways we try to move A’s day along. She presumed competence. She sees A in an accepting light, which means she is not trying to eradicate behaviors so much as bring out his sociable nature. She didn’t need to be told how elusive sleep is. She didn’t judge when we said that A not eating the vegetables in school lunches doesn’t bother us because a) he doesn’t eat bland food, and b) he eats plenty of vegetables for dinner.

See? Imperfection is morally neutral, and should always be. A works hard to show up and remain present at school. Just because he is older now doesn’t mean his labor should go unacknowledged, or that he doesn’t need to see and hear affection in how people work with him. He gives everything he’s got to every interaction, so the very least we can all do is think carefully about what his world should feel like to him. If he perceives that disability is a pathway to constantly shifting goalposts, conditional love, and disrespect, he does not have the manipulative nature to pretend it doesn’t shatter him.

Partly, what I am saying is that anyone who works with him or cares for him has to learn how to hold their own hand. He cannot be parentified as many children are, i.e. when children have to care for the adults in their lives, whether emotionally, or by being perfect students so the parents can look good, or by taking over physical tasks. And I think that’s a good thing. Too many Desi kids are parentified.

But even with school staff, if you don’t have that lifelong exposure to autistic people whom you love, then it is easy to think mostly in terms of goal setting and professional benchmarks. And that can end up diminishing what is invariably a complex way of existing in the world which is not cherished or protected enough. Rather, it risks placing the blame for non-acceptance at the feet of the disabled person, forcing them to deny themselves to the point of suffering to earn external regard.

Also partly, I am saying that when you read mine or other people’s writings about autism life, there might be a temptation to place yourself in A’s position. And I understand it. Everyone wants to be seen with loving clarity. I know what kinds of parents the two of us are. I know we see R and A this way. And when I engage with some of you, I might see you this way too. But when it comes to me and autism, you must hold your own hand emotionally.

I am asking that of you because we live in a harsh, ableist world, and our family is immensely, hopelessly isolated by a lack of access to public spaces. Things don’t get better unless we do what’s right even when we aren’t the direct beneficiaries of that righteous action. And this difficult part is not morally neutral at all. It asks of you what you do not wish to give.

Radha.

Source:

Davis, K.C. Struggle Care: How to Keep House While Drowning. New York: Simon and Schuster, 2020.