People with Disabilities vs. Caregivers. No one wins.

On August 21, 2015 a Federal Appeals Court reversed a Lower Court ruling regarding overtime pay for Home Health Care Workers. In the ruling, the court ended the exemption  of home care workers from overtime pay. The long term caregivers union is rejoicing. Advocates for people with disabilities are angry. The fight isn’t over.

People with disabilities are concerned that they will lose caregiver hours because agencies will stop paying the full hours people need to stay in their homes. Private pay employers won’t be able to afford their workers. Caregivers are angry because they are paid low wages but must work more than 8 hours a day. Caregivers are fighting for a livable wage and people with disabilities are fighting to live.

When people with disabilities are pitted against the people who care for them, who wins?

This battle reflects a deeper problem. People with disabilities are not considered viable members of society and therefor have no value.  The people who care for them are primarily people of color and women, groups traditionally considered low status. The system of caring for people with disabilities is structured around “cost savings.” As long as it is shown that keeping people in their homes saves society money, then doing so is considered important. But what cost do you place on respect and dignity?

Caregivers work as nurses, housekeepers, drivers, secretaries and cooks. They often bathe, dress, and help toilet severely disabled people and are paid minimum wage. Despite the long hours, most caregivers are dedicated to their clients and feel that they are making a difference in the world.

People with disabilities rely on their caregivers to not only support their physical needs, but to also help them engage with the world and enjoy their lives. The threat that they may lose their supports if a pay increase is mandated is real. State budgets are strapped and agencies run with minimal staff. Where will the money come from? And for those who have  to pay out of pocket for caregivers, will the changes force them to go into an institution simply because their insurance will pay for it?

I am my daughter’s caregiver. I also rely on other caregivers to help me keep my daughter in our home. I gladly work far more hours than I am paid, and I know other caregivers who do the same. Many of these workers are not family members, but they know if they didn’t donate hours their clients would suffer.

It’s time for caregivers and people with disabilities to stop fighting each other. People need to stay in their homes and workers need a livable wage. Rather than suing each other, it is time for both groups to unite and demand increased funding for programs that support the disabled. We need to examine our society and ask why we are so willing to throw people away simply because they can’t care for themselves.

Reclaiming the joy of writing while being a caregiver.

Because of my husband’s cancer fight, my writing productivity has dropped. When I try working on my book my brain freezes and it takes hours to write a page. Before, the words flew through my fingers, but now they drip like melting snow on a roof.

I’ve decided that’s okay.

Somewhere along this road of creating a publishing company and editing business I lost the joy of writing. My work had to be useful, meaningful… productive. I didn’t allow myself the luxury of sipping strong coffee in a cafe while writing bad poetry no one would read.  “What are you writing?” sounded like a challenge; I’d better have an answer and several good pages to show.

I’m still working. Currently I’m writing a middle grade chapter book and a rough draft for my memoir. I’m also researching drag queen culture for a new play. Writing is in my blood. But instead of worrying about word counts and productivity, I’m relaxing into the process of writing. The outcome isn’t important right now.

My energy is needed to help my husband fight cancer and my child transition into adulthood. Therefore, I’m reclaiming the joy of writing, which includes several pages of awful poetry.