158. A Communal Cure for Jadedness

“A Communal Cure for Jadedness”

This week, we attended a winter concert at A’s school. Being a special ed school, the teachers and staff don’t have to deal with trying to fit our kids into mainstream performances. Instead, they get to design a program that is succinct, and tailored exactly to the abilities and inclinations of each class.

I’m sure I don’t need to tell you how many excited parents and grandparents showed up. Living in such an ableist world as we do, we get very limited opportunities to celebrate our kids this way, and we make the most of them. More about that later. It was also a sneaky relief to be in a special needs environment, a breather and a balm.

A spotted us right away. He saw a sea of visitors, and his senses flared into full-on alert mode. He spent the whole concert returning his gaze to us, and when my husband stood up to take a video of his class performance, A became so bothered by the change in placement, he forgot some of his steps. Then he got distracted by the ceiling beams. We couldn’t stop laughing. He managed a very jaunty bow at the end, which was somehow the most endearing thing of all, and returned to his seat, blowing us kisses like he was Bruce, waving to screaming middle aged aunties at the Jersey Shore. He spent the rest of the show bopping to every song, scrolling through his speech app, making sure we were still there, and of course, bellowing with all the emotions. When the show ended, and A returned to class, he gave me a kiss, then turned and waved at us dismissively. Hi, I’m busy, go and do whatever it is you do when I’m not thinking about you.

I won’t describe any other kids in detail because that’s not an ethical thing to do, but the way many of our kids reacted to the extra energy of an audience was so beautiful. And I loved how the kids with multiple disabilities were accommodated in whatever ways were possible. The staff all know how much this event means to us, and they came through like the superstars they always are.

The same day, I attended another concert organized for a good cause, and some wonderfully talented teens bowled us over with their vocal and musical skills. As I sat there taking it in, I reflected on what I was feeling. I’m going to make a list, because why not:

-Being in abled spaces is not so enthralling for me anymore. I can appreciate the skill levels and enjoy the way good music flows over me, but I no longer wish to inhabit spaces that don’t also include disability in equal measure. That’s too bad for me, because it isn’t like that now, and we have a lot of work to do to convince people who benefit from the status quo. We need to stop thinking of special needs kids as worthy only of interventions and therapy, but also as regular members of the community who should be everywhere, doing things that their peers are doing.

-This starts with being willing to include all kids in extra curriculars and community instruction, not only for ‘therapeutic’ purposes. If our kids are not interested in the stage life, let’s find something more suitable.

-I think that high school performances should always have show times for special needs audiences. Keep the house lights on, tone down the mic volume, and let the audience be however they need to be.

-Every variety type show should include performances by special needs members of schools and communities. Not as a charity thing, but as a regular thing. I used to be shocked by Bharatanatyam dancers wearing their glasses onstage in America, but hey, you could say this is a kind of accommodation of assistive devices, so let the wheelchairs, iPads, headphones, and helmets in too.

-I promise you that, just as some of your deeply average kids still get my enthusiastic applause because all kids deserve it, so too will you adapt to my kid’s presence and performance level. We should not only be applauding special needs kids with exceptional skills, but all special needs kids. Their skills and confidence have potential to develop, just like any other kids’. We should encourage every child no matter where on the skill acquisition ladder they are. You think they’re on the bottom rung? They left the house today, and tolerated a lot of sensory taboos to stand in front of you. I’m clapping hard for that.

-I always shine the spotlight more mercilessly on the desi community because we need the scrutiny, but we need to be more punctual about show start times; no tuning instruments on stage; sound checks should be finished before the curtain is raised; time all speeches to last no more than two minutes, and have fewer of them; audience could play less on cell phones and be less talkative—then we can start to talk about inclusion. Our kids will use up all their good behavior just waiting on you to be quiet and ready. But you guys cannot stop staring at them when they start screaming because you didn’t begin on time, and are so intolerant of their noises, while being so distracted yourselves.

-Mostly, we as desis have a truly horrible stew of condescension, pity, charity, and avoidance when it comes to disability. Then, when it is directed at someone we know, we say “Just ignore everyone” or “Surely it’s not that bad” or “I’m not one of those people” or “Try alternative medicine.”

Seriously, no more talking. Only action. Let our kids into every sphere, and maybe we will have some reason to listen when you say something about disability.

It is highly disingenuous to make communal desi life almost all about performative acts of one sort or another, then tell families like mine that we should adapt to being shut out from all that. Would you accept that for your own family? And if not, why should I?

I hear a lot of groans from my fellow mom friends about feeling obligated to attend one another’s kids’ arangetrams and recitals. You know what’s a good cure for being so jaded? Inclusion!


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