Caregiving is women’s work.

It is with that simple statement in mind that I went to the Raising Women’s Voices Conference last month, sponsored by the Avery Institute, Merger Watch, and the National Women’s Health Network.

I was invited to participate on the opening plenary panel to discuss voices that are traditionally left out of health care reform discussions. I talked about direct-care workers — and about Health Care for Health Care Workers and the broader work of PHI.

The conference brought together women’s health advocates, providers, and women in general to talk about health care issues and shape a women’s agenda for health care reform. There were the usual PowerPoint presentations and policy recommendations, but the way the organizers encouraged presenters to tell our stories made it clear from the start that this was no ordinary conference. Raising Women’s Voices lived up to its name, honoring the power of women’s voices and experiences as consumers and providers. 

In my day-to-day work talking with policymakers, I have to show lots of facts and figures about direct-care workers not having health insurance and figure out how to “make the case” that this issue matters. At this conference,  people listened intently when I opened my presentation with the story of Iya’ Negra, a direct-care worker in Maine. Iya’Negra was diagnosed with fast-growing fibroid tumors after she was kicked by a consumer with Alzheimer’s and the pain from the kicking did not subside. Because she had no health insurance, her health problem turned into a crisis for her whole family.

Sure, the fact that one in four direct-care workers is uninsured was a new and shocking statistic to many at the conference, but what struck them most was how that issue impacts the day-to-day lives of workers, the consumers they assist, and their families.

As I went through my presentation, I remembered the instruction of Byllye Avery, to “Make this real!” Nearly all of us women have stories about caregiving and how it impacts our lives. I thought of my own story. As an only child, I know one day it will be my responsibility to provide or manage my mother’s care, so the looming care gap that is common knowledge here PHI will have a very real effect on my own life in the years to come.

Documentary filmmaker Julie Winokur showed a film she made about being a part of the “sandwich generation” and spending time as a primary caregiver to her aging father, who had Alzheimer’s. Tears and sniffles filled the room as the women in the session related to what was on the screen. For one woman, the movie paralleled her own reality so closely that she had to leave the session for a while.

During the “Voices of the Unheard” segment, Winokur talked about how her family could not have cared for her father without the help of a paid caregiver, and  lamented not being able to offer her health insurance.

Caregiving is indeed women’s work.

Perhaps my favorite moments of the conference were the conversations I had with a couple of women who talked about their mothers or grandmothers being in nursing homes or assisted living facilities. When they wondered aloud how to find out whether the workers are paid good wages and have health insurance, I encouraged them to develop relationships with the caregivers who work with their loved ones. To ask workers questions about their lives. To talk to the management at the facility about why they do not offer health insurance.

In other words, to be an advocate, listening to – and passing on — the stories of people on the frontlines of long-term care who struggle to pay their bills or find affordable, comprehensive health care coverage.

Tameshia Bridges, Senior Health Policy Analyst, PHI’s Health Care for Health Care Workers Campaign
tbridges@phinational.org