“People with disabilities are the unexpected made flesh. The challenges of living in a world not built for us are occasions for resourcefulness and adaptability, especially for those of us who start out disabled early in life. We are innovators, early adopters, expert users and technology hackers as we respond to the adversity that the built and natural environments present us.” — Rosemarie Garland-Thomson
Early on, I would try to start seeds and, eventually, they died.
I would put them in neat little rows, give them fertilizer and water them. I would do everything by the book, everything I am supposed to do. But for some reason, I was rarely successful. My corn never grew past my knee, my basil yellowed and wilted, my lettuce seedlings rotted.
My son, on the other hand…. Jasper* finds old seed packets and sprinkles them in patches, not rows. He doesn’t pay attention to the weather. He forgets to water for weeks. He puts tomato cages around peas and leaves tomatoes to sprawl out. He grabs a bulb of garlic from the kitchen and shoves it in the ground.
He makes up his own rules, he doesn’t do what he’s supposed to do.
And for some reason, his garden grows.
Jasper’s garden is beautiful and lush and thriving. There is a corn stalk growing strong and tall out of the strawberries. There is so much parsley, we have to cut it back to make sure the peas — which like tomato cages much better than the stakes that I would have tried to train them up — have enough sunlight. The spinach, calendula and cherry tomatoes are doing great, even though we didn’t plant any this year. Last year’s ignored plants went to seed and just did what plants have done since plants began.
They had no reason not to in our garden.
For some reason, I often think about disability in the vegetable garden. Humans often have incredibly detailed judgements of the physical differences of other humans. We can even judge animals with physical differences. But there can be quite a lot of variation in individual plants before we start making judgments about them. Who cares if it’s missing a leaf or two? Who cares if one is shorter than the other? Who cares if it takes a fraction longer to grow?
Along the West Coast, where I live, many trees stretch eastward, away from the ocean, looking as though they were bent by the wind. These trees would grow fairly symmetrically anywhere else, but the harsh ocean wind kills the new buds that try to grow on the windward side. No one calls the result crippled. Or defective. Or disabled.
We call it beautiful. We put it on postcards.
Those trees remind me of the miracle of life. How even in the harshest circumstances, even when irreparably damaged by the world, even when planted where nothing should be able to grow, life not only survives but thrives.
My children survived and thrived under extremely harsh circumstances. And where others might see brokenness and judge them less-than or “other,” I see beauty and strength and resilience.
I wrote this a year ago and Jasper’s garden is still going strong. I hope it survives this week’s unprecedented heat wave in the Pacific Northwest — the third natural disaster we’ve had this pandemic year. But, even in these harsh conditions, we’ve learned to focus on growth to survive and thrive.
*Not his real name
What I’m reading this week
A round-up of news for parents of disabled children.
First, a note: If you are pregnant and in an area with heat advisories, please make plans this summer for keeping yourself cool.
This webpage from the Harvard School of Public Health has a lot of good advice: Climate Change and Pregnancy: Preterm Birth
Research shows that higher temperatures are associated with preterm birth.
• A systematic review in 2020 that looked at 32 million births in the U.S. found that maternal exposure to heat was associated with preterm birth in nearly all studies assessed.
• One study, for example, showed that living with unusually warm temperatures (which were warmer than 90% of similar days in past years) during weeks 1-7 and 15-21 are associated with increased risk of preterm birth.
• From The New York Times: Child Tax Credit Explainer
Starting July 15, a chunk of that credit will be sent to you in installments of $250 or $300 every month through December.
If you filed taxes last year, you don’t have to do anything. The money will be directly deposited to your bank account. If you didn’t file taxes last year, the I.R.S. has set up a new portal for you to register.
• From The New York Times: Medicaid enrollment jumped during the pandemic, a new report says.
Medicaid enrollment had been declining in the years leading up to the pandemic. More than a million children lost coverage between December 2017 and June 2019, a trend that had rattled health care advocates. Many attributed the changes to new rules during the Trump administration that made it more difficult to enroll in the benefits.
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