Perpetually Disabled

It’s disability pride month. Here are some musings from Lily on what it means to be disabled.

1. the perpetual exhaustion

2. The perpetual threat of poverty

3. The perpetual medical gaslighting/

There is a common misconception that fatigue is just a fancy way of saying you are tired. But it’s beyond tiring. It’s your body not being able to properly rest.

When I wake up I feel deep exhaustion. When I go to sleep I feel deep exhaustion. When I have a hard day, when pain flares, when microaggressions bite, when it all happens, I’m left devoid of everything. And it all still continues — this is the exhaustion in perpetuity.

The doctors’ appointments. The missed days of work, or even having to stop work completely. The costs of disability add up quickly. The inaccessible world will charge you more to live in it. The government will require you to either take their low benefits or push yourself into the workforce, risking injury, flare up, or worse.

How do you get out of poverty when it chases you daily? Poverty is endemic in our communities and those of us hovering slightly above the poverty line are perpetually in danger of falling.

Unbearable pain keeps you up at night. The ER dismisses you to your primary care physician. Your PCP…