THE WASHINGTON POST

MY DISABILITY DOESN'T SHORTEN MY LIFE EXPECTANCY. MEDICAL RATIONING MIGHT

Most of my symptoms are invisible. If hospitalized, I'd keep it that way as long as possible.

On our 21st day of total isolation, my husband, David, and I curled up in bed, sleepily discussing how our toddler was coping with having only us as playmates. (Mostly okay, albeit with some new phobias: certain pillows, falling vases and our sleepy geriatric dog’s “sharp claws.”) Mid-conversation, I made the ill-advised decision to check the news on my phone. Within seconds, we were wide-awake, sitting up, computers out, plotting how to make me appear as not-disabled as possible.

I have dysautonomia and Hypermobile Ehlers Danlos Syndrome (hEDS), which has multi-system effects including heart rate and blood pressure dysregulation, partial digestive tract paralysis and unrelenting chronic pain. When I’m not in my wheelchair, you wouldn’t know that I was disabled — most of my symptoms are invisible. And if I fell ill with covid-19 and had to go to the hospital, we would want to keep it that way for as long as possible. My disability does not naturally shorten my life expectancy, but I’m afraid that medical rationing could.

We decided that I definitely wouldn’t take my large power wheelchair to the hospital; I would instead rely on the manual options that they would provide. That way, any mobility issues could be blamed on the virus, and not my disability. We would certainly exaggerate just how many tasks of daily life I can do on my own. (I can’t grocery shop, cook or clean, and there have been times when even getting to the bathroom was more than I can manage alone, but I definitely wouldn’t mention any of that.) David and I thought through my different identities — writer, mother, social worker — and decided that the last vocation was the most valued by society; I’d lead with that.keep reading.....