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I’m furloughed. I’m also disabled. I have to choose between care and keeping the lights on.

For furloughed workers with disabilities, our independence is at stake.

People line up at a pop-up eatery under a sign reading, “Free food and coffee for federal employees and their families.”
People line up to get a free lunch at a pop-up eatery hosted by Celebrity Chef Jose Andres for furloughed government employees and their families, on January 16, 2019 in Washington, DC.
Mark Wilson/Getty Images

Right now, there is a line that separates those who can afford to outlast Trump’s government shutdown and those who may not be able to. As a young disabled woman now living without a paycheck, I’m not sure if I can make it.

The shutdown has gone on for weeks, and once again, the Republican Party is turning its back on the millions of Americans who live with disabilities. Thanks to President Trump, I am on furlough and am forced to live without a paycheck, leaving me unable to pay independently for my daily medical needs unless I receive help from friends and family.

Like many people in the disability community, I use Personal Care Assistants, or PCAs, on a daily basis. In addition, I rely on a system that includes spouses, friends, doctors, physical therapists, and mental health professionals who work with people with disabilities and chronic illnesses.

Every morning, I need help getting ready for my day, including getting out of bed, getting food, and bathing. I often cannot leave my apartment without some assistance. If accidents happen, such as when I fell a few days ago in my apartment, I need help getting off the floor, retrieving first aid, and feeding myself.

But the workers in this system need to be paid, and for people with disabilities, these costs are not always covered by insurance. Those of us who cannot afford these services are frequently forced to give up independence and live in medical institutions.

Personal care is a pillar in allowing many in the disabled community to have jobs, social lives, to live on their own — to be more independent. And Trump is threatening that.

I pay out of pocket for PCAs, as opposed to going through an insurance or care agency, because it allows me to be more in control of who I hire. Now that I am furloughed, I have less money to pay them. On my regular paycheck, I spend more than a third of my income on personal care services. But now that I’m furloughed, I’m forced to prioritize my care based on what I can afford.

This shutdown has led me and many of my peers to face questions such as, “Do I pay for my prescriptions or do I pay my electric bill?” I have an epilepsy disorder, and when I did not have the funds to pay the copay for my medication, my treatment was interrupted for four days because my utility bill automatically withdraws from my bank account. I did not have the immediate funds to pay for both.

I was able to pull together money to get back on my medication, but if this shutdown continues, I may have a difficult decision to make. Trump is literally making me choose between keeping my life and keeping the lights on.

This is an unspoken struggle of the government shutdown: It puts out-of-pocket medical necessities at risk. If and when the government does resume, I will be able to revert back to my normal level of care — but I will also have to spend more time and resources recovering from this period of interrupted care. I have to work harder to take care of myself because I currently cannot pay for help, leaving me weak and unable to complete larger tasks and chores I could have done.

If the government does not reopen soon, I run the risk of losing my ability to pay my PCAs. I want to keep working, I want to keep supporting myself, but the government shutting down will soon prevent me from being independent.

Trump lauds the idea of an American dream, and the American dream includes everyone; people with disabilities are no exception. Why is he taking away my chance to create mine?

Kings Floyd is a disability advocate based in Washington, DC, and Portland, Maine.

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