"I’m so sick, but I can’t miss work."
"But you’re only going to make yourself sicker. I’ll be ok."
"I can’t. Who’s going to pay my bills?"
In Texas, caregivers on average make about $8, give or take 50 cents. They don’t qualify for insurance and they aren’t guaranteed 40 hours a week. They don’t have sick leave, and they are expected to show up everyday or risk losing their job. Many take caregiver jobs with zero experience and training, and they aren’t warned about what to expect. Because of the low pay, few people continue working as caregivers, and those who do stay always find themselves having to find a second job. Care giving has become a job market requiring little skill with a high turnover rate that is detrimentally affecting the workers as well as the people who have come to rely on these services.
For the disabled, caregivers provide that opportunity for us to live in our homes and not in a nursing facility. They are a gateway to the ablest norm. What they see as their normal, is what we’re trying to accomplish: being able to live our lives the way we want. It’s about choice. It’s about independence. My caregivers, or providers as they’re known here in Texas, help me get up in the morning so I can go save the world per se, and they are there at night so I can go to bed. They are my working arms and legs. An imperfect solution, but it’s a solution. One that’s threatened everyday by the agencies that employ them and the state that decides that caregivers just are not important. That the low pay is perfectly acceptable for a caregiver. Are our mothers and fathers and sisters and brothers truly worth so little?
Amy has been working with me for a year. She’s in her early twenties and has two little girls ages 4 and 2. She’s a single parent, but that hasn’t stopped her from doing the most she can for her girls. Not a day goes by where she doesn’t think about their well-being. Amy has two jobs. She works for me through an agency and she works for another agency doing the same thing. Neither agency provides enough hours, so she’s always scrambling to get more work. Neither agency allows for overtime, so if I need her for backup on a shift, and she’s over her hours, the agency will send a complete stranger to my home, and she’s out of luck. So am I.
I’ve told Amy to go back to school and become a nurse. At least the pay is better. And when she leaves, I’ll have to train someone new. I will always have to train someone new. That is my reality, which is fine. What isn’t fine is having to train some stranger every month versus every year. It’s not fine wondering whether my future might end in a nursing home because Texas doesn’t want to pay for care giving in the home anymore.
Then there’s Stacia. She’s been with me for about 6 yrs. She’s been making $9 and hour for 6 yrs and won’t get a raise again this year. She’s been sick a lot more lately, but she still shows up. She can’t afford to see a doctor. When she did end up in the ER, it was worse, and then she received the bill. Like many in her profession, she had no insurance and didn’t qualify for the ACA because her income was so low. I know she has debt, but Stacia won’t leave me. She found a second job that pays a little better, has insurance, and she still helps out on the weekends, but the damage has been done to her and me. I’m still trying to find someone to cover the shifts she had to give up. No one wants to work for such little pay.
It’s easy to say that a job is a job and at least you’re getting paid. Except you can’t even pay rent, food, electricity, etc on $800 a month. While the cost of living has gone up, care giving has stayed the same, and only those people who are really dedicated to this type of job stay. Some are even fortunate enough to find private care jobs where the pay is quite reasonable. I keep telling myself that one day I’ll be able to make so much money that I’ll be able to pay my providers a decent wage. The lottery just hasn’t accepted my numbers yet. I was so sure last time…
Either way, it’s blogging against disablism today. This is just a peek into what my life is like (I’m a superhero in disguise). Everyone’s story is different, but our struggle is the same. Here’s a peek at what everyone else is writing about.