176. Durians, Donuts, and Disability

“Durians, Donuts, and Disability”

On one of my recent trips to Singapore, I bought a book called “Durians are Not the Only Fruit,” by Wong Yoon Wah. It’s a compilation of essays, translated from Mandarin, about some of the flora and fauna native to Malaysia and Singapore, and the author uses descriptions, recipes, historical details, and his own memories to comment on how the Malay peninsula became home for Indian and Chinese laborers, how much there was to learn from the native Malay and indigenous peoples, and the impact of British colonization on the two countries (which used to be one).

At first I found the essays rather tedious. The author seemed so positive about colonial governance, and since the first publication of this book was 1981, I suppose we have to wrap our minds around the sensibilities of the time. I was a kid in the 80s, and colonial history was taught rather carefully. Even when we learned about the Emergency of 1948 to 1960 (when the British were fighting communism, and used many draconian methods to do so), it was with a view to how dangerous the commies were, and how heroic and diplomacy-minded the Brits were. Neither is a holistic description. The very idea that the British, who had abandoned Malayans to the brutalities of the Japanese Occupation during World War Two, could now decide what governing would continue to look like, is appalling to our thinking today. But the truth is that rural Malayans were rounded up and placed in internment camps so that they couldn’t render aid (willingly or unwillingly) to the communists, who mostly hid out in the thick jungles, and raided the villages for food and other supplies.

When Wong talks about living in Singapore now, and returning to jungly bits of Malaysia for vacations, he describes a psychological shift that is permanent—a boy whose family hid in those jungles to escape the Japanese, and survived on the foods that grew naturally, who scrapped it out in Emergency-era camps, had now become a man with urban polish, who found the silence and dense vegetation and animal sounds unnerving. But he still loves the flora and fauna 🙂

There is no natural transition from my talking about this book to ruminating on autism life. I am reading it because this prolonged shutdown is a strain on my nerves, and reading is one of the profound pleasures that I am using to achieve respite from the lived reality. And a book of essays on something so gentle as nourishing foods, especially from the region I grew up in, is perfect for now, when America of the Uncontained Pandemic is the diseased flotsam of the world, and we are not welcome to travel anywhere any time soon. I am by no means in possession of a rural soul, nor of a fauna-loving one, yet I am able to escape into the narrative and find my center.

No wait, I think there is a transition. Here it is: It’s the “to open schools in the fall, or continue with online instruction” conundrum. If you know me at all, you know that I am not putting my poor dear A in group settings when so many people have been engaging in risky, COVID-spreading social behavior this summer. People keep saying stuff like “we have to learn to live with the virus.” But I believe it’s more like we have to learn how not to die from it.

If you know me, you also know that I am here to say that autism and online instruction are a terrible combo. The past few months have been awful. And if we are looking at more of same, my husband and I are going to lose the last of our black hairs and our productive habits. We do nothing but autism, and without outside intervention, we cannot have a meaningful life at all.

One of my favorite old tv shows is “Designing Women,” and we were laughing about how A’s life has become like Noelle’s. Noelle is the pet pig belonging to Suzanne Sugarbaker. She takes Noelle for drives, and then they stop at the Dairy Queen for a Buster Bar. My husband would be Suzanne; and he takes A for endless drives every day, which culminate in a chocolate glazed donut from Dunkin Donuts. 😉

But the pandemic is winning, and we have to accept our diminished quality of life. Just like Wong, we are using the produce of the land as a way to stay connected to something beyond the structured chaos of our household. Just like him, we are trying to preserve some separation from the (federal) powers that be, who care not for us, and ask of us that we place our (at this point imaginary) liberties aside so that we can engage in a pantomime of trust in the collective capacity to regroup safely. We disrespectfully decline such invitations to sacrifice our lives to an unworthy cause.

Opinion amongst parents of severely autistic kids is divided as to the wisdom of returning to school. So many kids have regressed, destroyed property, been aggressive with family members, and are struggling to hold onto their self worth in communities that hardly stepped forward to befriend them before, and have largely forgotten them now. School, and outings to communal indoor spaces, were their access to an outside life, and those are gone now. We have all created simulations of those things, but they do not include the bus drivers, aides, teachers, lunch ladies, therapists, and other personnel whom our kids consider their outside friends and family. So the appeal of sending kids with high needs back to the structured environment of special education is understandable.

The flip side is, of course, the risk to the kids and the educators. And I am not going to sugarcoat this—you (general you) do not place any real value on our children. So we have to, with a greater vigilance, because you won’t. This pandemic has shown so digustingly how unequal the access to proper testing and treatment has been for various marginalized groups, and the disabled are always, predictably, in that demographic. So, no. If the wider society cannot seem to practice the altruism required to contain this crisis, I will not be giving my beloved child up so that the economy can chug on. I already know what his prospects for high quality medical treatment are. I will not gamble on him.

When you (general you) engage in pandemic-prolonging behavior, like not wearing a mask properly or at all, or attending social gatherings that should not be happening right now, just know that families like mine are forced to endure in worsening circumstances. There is no one to help us mitigate the fallout. No one is coming to save us. You could change that.

Will you?

Radha.

Source:

Wong Yoon Wah. Durians are Not the Only Fruit: Notes from the Tropics. Singapore: Epigram Books, 2013.

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