202. Shaping Utopias

It’s high school graduation season for R, and he has two very proud parents.

Every time I have to be at school events, the suppressed ragey memories come busting out of the mental space I normally shove them into. And I’m just the parent…The ways in which unacknowledged ableism and racism and the enabling of bullying combine to cause trauma, and contribute to the sidelining of kids who can’t endear themselves to the powers that be with mainstream personality traits and cultural expressions, well connected parents who uphold cherished American traditions, and athletic prowess combined with good grades. Not to mention ideally abled learning habits in the classroom.

All of these were on display at the recent senior awards ceremony. To be very clear, I am in no way unappreciative of the wonderful and talented kids who swept most of the highest honors. My good wishes and elder blessings are always with them. As they are with the kids who received rather token, performative recognition. And as they are also with those who were absent from the event because they did not make the cut. And that is why I feel no qualms about writing what I just did. There is probably not so much distinction between most of the students, given the exclusionary lens used to divide them. And I think that is worth stating very openly by parents like me.

I rarely rat out our school district because who needs the pushback, but a few months ago, I tentatively joined the zoom planning meetings for post-grad ceremony partying. It was a bunch of seniors’ parents, plus, for the first meeting, the high school principal. When asked the size of this year’s graduating class, he offered up the number, but then said that not everyone would attend because “not all of the students engage with the larger school spirit.” I can’t recall his exact words, but I had to call on a lot of self control to stay silent. He’s not a terrible guy, but my god, there are valid reasons for many of the students to feel disconnected from the more visible, centered kids. And since the school will never acknowledge the part they play in this reality, go on and uphold this fiction till the end. You have helped warp and shape the trajectory of the marginalized students’ lives, and now you express detachment at the fact that they do not feel themselves to be a meaningful part of their own rite of passage. At the fact that the shadows of people you held above them erase their achievements till the end, albeit unknowingly. And you conflate the kids you like with “school spirit.” Age old it may be as a trope, but it is eternally ludicrous.

Gosh, that felt good to write. And you know, part of why bias is so insidious is precisely because nice people wield it just as much as terrible people do.

Anyway, back to senior awards. R was given one for his independent study project, for which he chose to learn American Sign Language (he has a superb teacher). We sat in on his final presentation yesterday, and it was just amazing. The most obvious observation I made was how he navigated a) code switching (to speak to a largely neurotypical audience), b) using verbal speech, and c) using ASL. That was a whole lot. But also, he got us all to see ASL for the interesting and fun language that it is, and drew us into concrete awareness of disability as just another way of being in the world. It was a powerful experience.

I was intrigued by some of the ideas that came up for me as R presented:

One: He was not shy about letting his own disability identity be known. This is not small, given how horrible abled world often is.

Two: He brought up the fact that deciphering ASL can be a challenge because of his own visual processing challenges. But perseverance and interest have worked their magic.

This prompted me to remember that when A was younger, the school worked pretty hard on teaching him some rudimentary ASL. At the time, I tried finding us a teacher, but that didn’t work out. So no surprise that the ASL project didn’t gel for A, if his family had no way of keeping up and making it a functional language choice. Eventually, his home therapists started him on the AAC path, and A is now extremely proficient with a speech app.

More on this in a sec.

Three: R also talked about how ASL is more “blunt” than English, declining to clutter itself up with verb tenses, or too many prepositions and conjunctions.

So…. in essence, as we discussed later, it probably has stuff in common with Chinese languages. I found that fascinating.

After the presentation, I asked R if both were true, i.e. ASL is both easier for autistic people because it is direct, and also harder for autistic people because it is so visually complex. He said yes. We ruminated on that, perhaps, being why it was too much for A to absorb back then, without the whole family buy-in.

I am sure experts and self advocates have written about whether attempting to lift ASL from deaf culture and place it onto autistic culture was an endeavor doomed to failure. In A’s life, AAC has been starkly the better option, but until he moved to a special ed school, nothing much was done to introduce it into his school life. Even now, the district owns and services his iPad, and they place so many restrictions on our ability to operate the app, and take so long to get the iPad serviced when something happens to it, that he is often severely incapacitated by the lack. We have had to get him a backup device for these not infrequent emergencies, and download the app (not cheap). We also have to keep the app updated, to keep pace with the teachers adding word choices to the school version. For people who cannot afford these contingencies, there is a lot of uncertainty built into how and whether their kid can have consistent access to their range of communication. It deals a huge blow to the kid’s self esteem to be silenced this way.

There is also the fact that speech apps are still stigmatized in a lot of spheres. A gets “talked over” a lot by speaking kids. And I have read more than one account of autistic people having their devices taken away from them on flights. This is blatantly unjust, not different from denying someone wheelchair access.

I do love how interested R is in ASL. When people hear that he will be studying music ed in college, and eventually wants to work with students with disabilities, they usually say Oh yes, music therapy is so valuable. Yes it is. But also, a lot of disabled kids are inherently capable of learning music as an actual skill, but may not encounter teachers who are trained to work with them. So that’s exciting–a future music teacher who knows ASL might have a cool opportunity to work with kids who might otherwise not have a deeper musical experience.

I want people to know how much the trajectory of A’s life has been shaped by the school district not having people who knew how to work with him. A is hardly the only one. Kids like him do not have friends in their own neighborhoods. The years roll on with no meaningful community inclusion. So yeah, I am excited that R wants to be better than what he and A have experienced. If future teachers like him being in schools means that fewer kids have to be shoved out of their districts, or can have more than a “marking of time” experience in district, imagine how much less alienated families like ours have to be. I’m so proud that my kid wants to be part of that better future.

Similar to the assumptions about music being purely therapeutic for disabled kids, though, it is also a common projection that speaking folks learning ASL brings benefits that flow only one way. But the truth is that speaking folks benefit too. R is loving the education, plus if he could use it to expand his friend circle, he would be the happy beneficiary.

The ways in which R has been creating a world for himself, peopled mostly by chosen LGBTQ, disabled, and BIPOC family, has awakened me to how limiting and brutal mainstream world actually is. Why wouldn’t he and his peeps build something better, and be the change. Recently, my dad was having trouble hearing well on our family zoom calls, and R was the one who made the captioning happen. A world where accommodations are gently welcomed should be the norm. I am a fortunate mother who gets to watch this beautiful vision unfold.

And this brings me to one last point: There isn’t much use telling people to ignore the taunts and slights and erasure of an unjust world, and find their own solo acceptance. This is the rankest BS, and still so commonly parroted. Mental distress is the natural response to injustice and alienation. It is not the oppressed individual who must accept, but society that must change.

In a very short time, we will be attending R’s graduation ceremony. As always, it will exact a toll on me, being around a community that my children have mostly walled off from to survive. But my husband and I did good. We know it. We got the good kid.


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