'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care

• Read the transcript of this radio story in a Google Doc.

I was born with a progressive neuromuscular disability and my life has always been centered on care. Both receiving and giving it.

When I could no longer walk and started using a power chair, needed assistance breathing, and experienced difficulty swallowing and eating, I learned how to direct and manage my caregivers like a boss. I’ve done it ever since I was a child. This year, however, presented the greatest challenge in my abilities because the stakes were higher and dire.

In the immortal words of Ferris Bueller, life moves pretty fast — and that would be an understatement for me in 2022. Early this year I was finishing the final edits to my memoir, Year of the Tiger: An Activist’s Life, and preparing for book promotion. In the spring, my family and I spent a few glorious days in Calistoga. I had so much to look forward to.

Everything came to a screeching halt in June, when I suffered several medical crises, including a collapsed lung and an inability to swallow, which resulted in four weeks in the intensive care unit. I now have a tracheostomy that’s connected to a ventilator, and a G-J (gastrojejunal) tube that delivers liquid nutrition to my small intestine and stomach. I also lost my ability to speak and started using a text-to-speech app to communicate.

My entire world was turned upside down. One of the biggest stressors upon leaving the hospital was how I would get my intensive medical needs covered at home. The discharge planner said that a person like me with my disability and new care needs who is on Medi-Cal, California’s Medicaid program, should consider going to a subacute nursing facility unless they had family support 24/7. It was the only time I cried in the hospital.

Care infrastructure and policy in California

I already receive almost 24 hours of care per day through two programs, but it was impossible finding workers due to low wages, worker shortages and the fluidic nature of the workforce. I needed people I could train who were relatively reliable, so I resorted to hiring a team of private-pay caregivers to augment the help I receive from my family.

By the way, the wage rate for home care workers in the programs I am on is a paltry $18.75 per hour in San Francisco. And there are much lower rates in other counties. A generous friend launched a GoFundMe campaign to finance the indefinite costs of my private pay care, which is approximately $600 per day. This is something no disabled person should have to do to live in the community. Knowing how close I was to being institutionalized still haunts me and brings a searing clarity on how our society is focused on capitalism, productivity and independence, all of which is a scam.

My life is in my caregivers’ hands, and this is a cost I must pay because I want to live. Having five caregivers, training and communicating with them, and dealing with unexpected ups and downs when they are late or sick, or forget to show up, has taken a lot out of me as I try to recover and heal. Needing total help with my daily activities has cost me greatly: the necessary close contact with your body, the lack of privacy and spontaneity, the presumptions strangers have about your competence.

What I learned this year and what I’ve known in my bones during my entire 48 years on this planet is that nothing is certain, and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.

My caregivers care for me but do they care about me? I believe they do, but this is probably an unrealistic expectation because at the end of the day, it is a job, and I am committed to being as professional, respectful and responsible as possible. And yet, care work is different. People are in your personal space and there is a mutual vulnerability shaped by structural and institutional inequality. So where do we go from here in California and beyond?

According to the AARP Public Policy Institute, 14 million adults in the United States need help with personal care or other daily activities (PDF). A UCLA analysis of California survey data on older adults and disabled people found that 39.6% of people who reported needing personal care assistance either don’t have help or could use more of it (PDF). I asked my friend Mary Lou Breslin — senior policy advisor at the Disability Rights Education and Defense Fund, and a disabled person who has multiple home care workers — for three policy changes for California. Here’s what she recommends.

• The state lifted asset limits for Medicaid eligibility, yet income limits still exist, disqualifying some people from getting home care, especially those age 65 or older. Loosening or eliminating income limits and creating a meaningful buy-in program for disabled people of any age would dramatically help those who don’t currently qualify for home care services.
• California should enact legislation based on the principle of Universal Family Care, a social insurance program model for home care and other long-term services and support as envisioned by the National Academy of Social Insurance and funded through a payroll tax, an income tax or some other dedicated revenue source.
• The home care workforce should have across-the-board wage increases and benefits, such as paid sick, vacation and family leave. There should also be career ladders and training options and a loosening of immigration restrictions. The social insurance program mentioned above could bolster and stabilize wages for the home care workforce and spur improvements in training and job opportunities.

Adding to Mary Lou’s recommendations, I wrote about the future of care infrastructure in my memoir. They are not unfeasible dreams. Change comes from wild imaginations of what is possible. Here is a short excerpt:

In the future, care infrastructure will be …

• one that treats care as a normal part of the human lifespan and not a failure or weakness to need help
• one led and designed by disabled people and others who need or provide care
• one that is free, publicly funded, and not means tested or linked to employment
• one that puts a primacy on self-direction of the individual, bodily autonomy and dignity of risk rather than a formulaic, medicalized training that pathologizes disabled, older and chronically ill people

Because of — not despite — the hardships I experienced this year, my life is filled with joy, beauty and gratitude. The cost of care is steep, but it doesn’t have to be a burden if people truly believe their security and wellness is tied to their communities, neighbors, friends and family. While I still feel incredibly fragile and scared about what next year holds, I know we can transform the world if we have the political and collective will to do so.

For a shorter, audio version of this piece, go to The California Report.

Alice Wong is a disabled activist and writer, and lives in San Francisco’s Mission District. Twitter: @SFdirewolf