While my sister Shobha was visiting me recently here in the US, we went to meet an enterprising young woman named Priya Shah. Priya is the creator of the board game Desi Chaat, which is a South Asian-specific game played in teams. It is a lot of fun to play something that uses words and contextual clues which are deeply familiar to us, and as much as I am usually bored by games, this one sucked me right in when we played it at a New Year’s Day party.
While we were at Priya’s house, her dad and I got to chatting, and he said how proud he is of his daughter for creating something which draws the generations together. Her parents are the cutest parent cheerleader team ever. Priya works a regular day job too, and her parents help her to take online orders for Desi Chaat, including shipping them out.
There is something more to the significance of what Priya has done, though. As diaspora-born Indians (as opposed to NRIs), I am sure we all grow tired of being told in various ways that we are Not Real Indians. So sure, if we (general ‘we’) are not, then set us free from the burden of cultural expectations, which seeps into everything we do. Let us fully belong to the countries we were born and live in, without judgment, default doctoring and engineering career paths, in-laws enacting patriarchal drama upon our households, and all the while being held at a mean spirited remove because Not Real Indian.
But if we are considered Indian (and no, the push-pull doesn’t work, ie treating us as Indians when it suits vs pushing us away when it doesn’t suit), then we deserve to be producers of Indian culture too, and not just passive torch bearers. Here is where Desi Chaat unapologetically claims that space. We loved meeting Priya, and wish her all the best in her journey.
Thinking about the game sent my mind down the path of what it means to be a South Asian autism mom parenting in the US. I’ve written before about the ways in which I think our community can improve, but only if we are willing to sit with some discomfort and actually work at changing how we think and talk about autism*
By far the biggest challenges are:
-a focus on immigrant excellence to the point of isolating families dealing with severe autism;
-treating our kids as inspiration porn and objects of charity, but not forming meaningful ties with them;
-apathy towards supporting meaningful efforts to be inclusive and to work for good adult outcomes;
-and the most important of all—not listening respectfully to parents and autism self advocates. We do not need more stories of other autism families you know, or what homeopathic meds would work better. And we need you to check your privilege in every way. If interacting with you takes too much work and boundary enforcement, then you are not part of the larger solution.
Believe that we are working hard as parents. Informing and educating ourselves. Taking the advice of trained professionals. Grant us the respect due to any person who is doing something difficult in this life, and give us the sense of a community that believes in us.
This is the work before us. If this is really our culture, what are we willing to do to make it one that autism families can look to for succor? No excuses in 2019.
*Some previous posts of mine: