“As a person with a significant disability — cerebral palsy — my life has always revolved around the need for care.” – Russell Rawlings
Contributor: Russell Rawlings (he/him), Education Organizer at Hand in Hand, The Domestic Workers Network. Russell has over fifteen years of experience as a disability rights activist and organizer. Born with cerebral palsy in Texas, Russell relocated to Sacramento, California in 2001, where he experienced a transformational connection to the Independent Living Movement. Russell served for seven years as President of DOGFITE (Disability Organizing Group For Initiating Total Equality), and most recently, as the Statewide Community Organizer at California Foundation for Independent Living (CFILC), facilitating the DOnetwork (Disability Organizing Network) — a statewide network of systems change advocates and organizers connected through California’s 28 Independent Living Centers. Additionally, Russell has organized with the Disability Action Coalition, including co-organizing the first Disability and Aging Capitol Action Day, which brought over 800 participants to Sacramento for a day of legislative advocacy with the disability and older adult communities. Russell enjoys karaoke, performing improv comedy, tinkering with electronic music, pretending to be an amateur musician, and traveling.
November is a time when the holiday season is undoubtedly kicked into overdrive. As the month and year come to a close, it’s natural that we follow the change of the season — to take a moment to reflect and share warm connections with our families and communities as the temperatures outside start to drop.
For the last few years, the holiday season has looked quite a bit different for me. My family is almost 2,000 miles away in Texas as I sit here in California, finishing off leftovers and spending time with my roommate — a longtime friend, now live-in caregiver, who just moved in with me at the beginning of the month.
As a person with a significant disability — cerebral palsy — my life has always revolved around the need for care. Up until adolescence, my parents were the sole source of my care. Both worked full-time jobs and simply made it work. It’s certainly not lost on me that the theme for this year’s National Family Caregivers Month, #CaregivingHappens, is both important to acknowledge and important to talk about.
I am thankful that caregiving does, indeed, happen. I also know that there are real challenges that occur for caregivers in order to ensure care does happen. For my parents, the challenge was the balancing of necessary careers in addition to providing my care. No compensation was provided to them for caring for me — instead, it was just going to happen because we were family. During my adolescent years, I feel I did take a lot of this for granted, and truly struggled with watching my able-bodied peers enjoy increased freedom from “care.” In many ways, I started to resent my dependence.
Just over 21 years ago, I made a change that has dramatically affected my life: I made the choice to live independently. While I tell everyone that my particular path to independent living was extremely messy and fraught with challenges — it began with a one-way flight from Houston to Sacramento — I can confidently say that I would not be here without the labor of caregivers. The care that began with my parents is now provided by people in my community.
In the years I’ve lived here in Sacramento, I have had more than a dozen caregivers. One caregiver adopted me when I faced homelessness early on. Two caregivers were romantic relationships that transitioned into care out of necessity. Several caregivers were friends or neighbors I knew previously, most of whom had no prior caregiving experience, but chose to take on the role. I’ve also had numerous experienced caregivers, who are doing the work because they are aware that care work is vital.
I am grateful that I have been able to grow in my own independent living journey while also growing into awareness that caregiving is a severely undervalued profession. My own journey includes the knowledge that the overwhelming majority of my caregivers are low-income. In fact, it is because of the support of caregivers who are paid less than a dollar over minimum wage that I am now able to have a career.
So, while I am very grateful for care, I am also deeply troubled about the future and sustainability. I have listened to so many of my disabled peers struggle to find caregivers. Many are faced with making difficult decisions, sacrificing their own health, or simply resorting to institutionalized care.
I’m also acutely aware of the problems created by a workforce that is almost entirely made up of low-wage workers. If we want to transform care, we need to address that our system is built on a legacy of devalued domestic work that is rooted in the history of slavery, and that most of the workforce today — primarily low-income women of color — are struggling to meet the needs of their own family while providing the vital care for disabled people and older adults.
These realities are difficult to accept, but it’s important to understand that “care” itself has been devalued for so long that we need to challenge ourselves to acknowledge when, where, and how it occurs in all of our lives. It’s true that we should all be aspiring to care for each other, but it’s also vitally important that we understand the United States has a large disabled population — 61 million adults, or one in four according to the CDC — and to paraphrase Ed Roberts, an early leader in the independent living movement, anyone can join [the disability community] at any time.
This holiday season, I hope that we all commit ourselves to working to expand the systems of care (most frequently referred to as Long-Term Services and Supports) that includes access for community living options for people with disabilities and older adults. In addition, we must commit to the fierce visibility of care work, including the demand for increased wages and sustainable career opportunities.
I am immensely grateful for all of the caregivers in my life, both paid and unpaid. As I celebrate this holiday season, I’m making a conscious effort to acknowledge that while #CaregivingHappens, we have a bright sustainable future together if we all publicly acknowledge and value that care work is real work.