198. Visibility and Embodiment

The way that Autism-laced April follows hard on the heels of the Trans Day of Visibility is disorienting to me. We are, after all, a neuroqueer family, and we live in these ideas all the time.

If you’ve read my poem “Disembodiment*,” you know how I feel about expecting people to agree to their own marginalization in the public sphere; about the dissociation that is seen as great meditative and spiritual rigor but is actually deeply messed up to ask of someone; and about the separate but equal view people have of alternate communities which I will never co-sign if it means that the mainstream gets to carry on without meaningful change.

Whether we like it or not, during these days or months of identity awareness, children like mine become selectively visible. There is an invitation to temporary embodiment, I guess? Even if self advocates and families endeavor to keep the focus on agency, and self representation that is not merely to make others feel ennobled and uplifted, it’s easy to see how the activism is expected, but also expected to be in digestible bytes. Everyone is busy, no one wants to read more than 200 words, if that, and they don’t want to hear anything too messy. But they also don’t want activists to stop writing and speaking because it’s so cool to have their words around to make the world more varied.

What I’ve come to understand from several years of teaching myself to speak up without compromising my own ethics, and learning from R what allyship could look like, is this: the more identities you embody, whether individually or as a family, the more everyone is really just okay with making you work for every moment you get to be visible.

Whether that is the right to come out at all, choose different pronouns, change one’s name, take hormones, have surgery, be on a sports team, use the freaking bathroom, get to be in a family, function in one’s school, workplace and neighborhood in safety and peace, and so much more, if you view someone being trans as “they are different, so the onus is on them to educate me,” you have already made a choice. The kind that needs fixing.

I regularly get told by various readers that people are more woke than I give them credit for. Yet every April, I still see them sharing posts with puzzle pieces, promoting Autism Speaks, and sharing disability inspiration videos about exceptional autistic people who defy the odds. Not to mention sending parents like me info about holistic cures, yoga asanas, and special diets.

I hear organizations talk all the time about being inclusive, but telling us that one or both of our children cannot be in their spaces.

As a parent, I have been kept standing at many metaphorical doors for nearly two decades, and the only time I finally get someone talking to me face to face is when I decide to leave, because the people who serve as gate keepers now cannot face that I have known all along how effectively they do their dwarapalaka jobs. Some of those exit interviews have been full of such CYA BS that their pollution has taken a lot for me to wash off.

People don’t say outright transphobic and anti-disability things. They wrap the aloo of rejection in parathas of smiling denial. And they make sure their social power structures stay intact. So you become cast as a sole agent of transgression who is now no longer a problem, and the organization still gets to appear inclusive. And they can still have photo ops with kids whose parents are less intractable.

To a lot of people, trans folks just living their lives is such a source of disgust and discomfort that yes, visibility is an act of self love. Autistic people reacting to the world in their own way, and insisting on their right to refuse the search for a cure are misguided and angry. And etc.

I am very moved by how R has taken ownership of what his chosen path will look like. This is what visibility should look like to the rest of us. We should feel a calling to support freely made choices, rather than maintain existing structures and ask neuroqueer folk to warp themselves into compliance. If they want to spend time with their families of origin, the price should not be an expectation to mask autistic traits and be closeted.

It’s also important to admit that, since many autistic and LGBTQ spaces are not BIPOC friendly, it is absolutely okay and understandable if not everyone feels safe to be visible, or wants to be about celebrating in mostly white spaces. No one gets to dictate those things. I have written about this before, but merely saying you are diversity friendly is not at all how a marginalized person might experience you.

It’s been a journey for me to perceive what embodiment can look like. And you know I will bring this back to what desi parenting and shared community often enact on each generation. I believe that neuroqueer folk don’t exist merely to better us. Their chosen families do not have to be built from surviving the ash pile of our terrified shame. They should be able to have all of it–openness about their truths, love and tangible support from the people who birthed and raised them, and infinite mutual love from their cultivated families.

What’s our job as parents? To open our mouths and talk about our kids without apology; to open our resources and make sure our kids get access to affirming healthcare and support, including mental health treatment if desired; and to open our minds to the possibilities of what our children’s future families might look like. By virtue of being an elder, I have power. I want to use it in ways that create more choices for my beloved no-longer-babies. And if something I’m doing is not working, I want to make sure I keep cultivating flexibility of thought rather than succumbing to my urge to retreat. It is now time for me to allow my children to be my teachers.

Like any other spiritual path, more facets will become visible to me as I learn to use my senses differently.

But never again will I agree to stand outside guarded doors. Anywhere your kids belong, mine do too. Welcoming me without extending said welcome to them is asking me to dismember myself, and I won’t ever do that again. That’s not love.


*Link to my poem:

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