What I’ve learned being reliant on a caregiver

Opinion by 

Editor’s Note: Alice Wong is the founder of the Disability Visibility Project and author of “Year of the Tiger: An Activist’s Life.” She tweets @SFdirewolf. The views expressed in this commentary are her own. View more opinion on CNN.

CNN — Last June I spent a month in the ICU due to several medical crises that left me in a weakened state without the ability to eat or speak. When I was discharged, there were numerous urgent concerns: finding caregivers to help me with intensive health care needs around the clock, staying on top of all of my medical appointments, being able to communicate, and affording all of the out-of-pocket supplies and additional private-pay care I needed. I was fortunate to have a friend who launched a crowdfunding campaign to help with some of those out of pocket costs.

My family and I worked hard to find a set of four private pay caregivers to supplement the care they already provide for me. But with any employer-employee situation, things can happen accidentally or at the last minute that throw a wrench in an employee’s work day. When your life is entirely in the hands of an employee those wrenches can have devastating consequences. One time a caregiver was supposed to start her shift at 7 a.m. and she never showed up. I was awoken by my dad around 8:30 a.m. after having laid in my feces for over two hours. I spent that day in a vortex of rage and despair – and it wasn’t the first time this happened with one of my caregivers.

What I did not do was report my caregiver to the authorities or fire her.

I am acutely aware of the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work, which is rife with low wages, unsafe working conditions, exploitation and abuse.

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