Politicizing Care: Katie Savin (PhD '21) examines equity, disability, and economic justice from a community-based lens

May 5, 2021

Katie SavinAs a medical social worker, Katie Savin was struck by the differences in patient experience between her work in the Stanford Medical Center ICU and in palliative care at San Francisco General. "The two hospitals were only one CalTrain stop apart, but it could have been two different countries. There was such a contrast between how people were dying; the patients' average age, their stage of illness at the time of diagnosis, and the kind of support they had."

When she was contemplating a career change, she initially considered pursuing a career in medicine, then realized she was more interested in exploring the underlying policy issues that gave rise to the disparities she had witnessed.

When Savin began the doctoral program at Berkeley in 2016, she initially planned to explore the end-of-life care experience for marginalized groups. But the persistent assumption that as a disabled scholar she must be a scholar of disability led to a shift in research focus when she received funding from the Social Security Administration to study how people living on SSI or SSDI benefits make ends meet.

In a report for the Social Security Administration, "Being on SSI is a Full-Time Job:" How SSI and SSDI Beneficiaries Work Around and Within Labor Incentive Programs," Savin highlighted the experiences and economic survival strategies of 13 SSI/DI recipients living in the Bay Area. Her report centers the lived experience of disabled people in a system that defines them in relation to their ability to participate in formal labor markets.

The study participants were diverse in age, gender, race, and ethnicity, but what they all had in common was the impossibility of making ends meet in the Bay Area on SSI/DI benefits, which are not adjusted for regional cost of living. Savin outlined strategies used by these adults for additional income, stressing that all of them were forced to go outside of the system to survive. She also highlighted the study participants' wish for improved access to education as well as wider conceptualization of work in recognition of unpaid labor they engaged in such as volunteering or activism.

In the larger study on this topic that she conducted for her dissertation, "'Playing the Game' On SSI and SSDI Benefits: How Social Security Administration Policy Shapes the Individual, Societal and Communal Disability Experience," she concluded with a series of recommendations for social work practice, policy and research. Her policy recommendations included addressing work disincentives (e.g. the practice of subtracting $0.50 for each $1.00 earned from SSI benefits); eliminating administrative differences between SSI and SSDI that penalize SSI recipients (e.g., the $2,000 asset limit); placing restrictions on SSA's ability to recoup overpayments; developing pathways for SSA-based employment for beneficiaries; and other policy changes to lessen administrative burden and improve living conditions for people living on SSI and SSDI.

Savin describes this aspect of her work as a kind of translation or code-switching: "I take policy fixes that are intuitive to people who are impacted by systems and programs, and put them in different wrappings for the people who are making decisions about those policies."

She expanded on this initial study in her dissertation — directed by Associate Professor Tina Sacks — which had a larger sample group and examined social questions as well as economic ones. In a capitalist society, she wondered, how does an inability to work due to disability impact a person's sense of self? The inability to work in a society that defines people in terms of their participation in the labor market can have profound psychic consequences: study participants reported feeling "invisible" and "less than human."

While many current policies are rooted in a medical, deficit-based model — one that defines disability in terms of a biology of what individuals cannot do — Savin's research employs the political model of disability to conceptualize anyone participating in the SSI and SSDI programs as disabled, regardless of impairment type, in order to explore the effects of SSA policy on the disability experience. The policies SSI/SSDI beneficiaries must follow to maintain benefits such as income and asset caps, work-reporting mandates and limitations, policy ramifications of marriage, as well as the process of accessing and maintaining benefits, create the unifying experiences that characterize this group of disabled adults. At a more fundamental level, she examines policy through a person-centered lens to highlight areas where federal policy shapes and reinforces the stigmatized and exclusionary disability experience.

In April 2020, as hospitals were contending with the possibility of having to ration care due to the pandemic, Savin was an early voice in helping define the ethics of crisis standards of care, particularly with respect to disability. In a blog post for the Hastings Center, "Confronting Disability Discrimination During the Pandemic," Savin and co-author Laura Guidry-Grimes highlighted the ableism that has historically characterized medical care. They referenced studies showing that disabled people typically rate their own quality of life higher than non-disabled people do — including medical providers — and cited examples of ableism leading to undertreatment and health care disparities.

Savin and Guidry-Grimes contrasted two definitions of equity: was equity achieved when the most lives were saved? Or when all patients have an equal chance of receiving maximum care? They then made a set of concrete recommendations to reduce ableist bias in crisis planning. These included making crisis standards of care available for public comment; involving disabled communities in crisis planning; training triage teams on avoiding discrimination against persons with disabilities; and avoiding both diagnostic criteria and perceptions of quality of life in any scoring system for triage. These same guidelines would also protect older patients in a kind of "universal design" that acknowledges disability as a normal part of the life course.

The post was widely read and cited, and recommendations like transparent processes for community input were adopted by a number of hospitals. Savin was contacted by San Francisco General Hospital and did consulting work with them as they reviewed their crisis standards of care. They now have a disabled person on their ethics board, which was not the case before.

Savin wonders whether the pandemic may shift attitudes about illness and disability, especially as we learn more about the long-term effects of COVID. Meanwhile, the barriers she encountered at Cal — like being assigned to teach in a classroom she couldn't enter in her wheelchair and being unable to access the doctoral students' lounge for over a year until the door was at last adjusted — were substantial enough that she considered leaving the program on multiple occasions.

Commenting on the paradox of encountering ableism on a campus that is often celebrated as the birthplace of the disability rights movement, Savin says "it's not necessarily a testament to the institution as much as to what happens when some really stubborn, feisty disabled people gather under the right circumstances and have the amount of access to privilege and information that comes at a place like Cal."

"I feel like I got my degree in administrative battles," she jokes. Looking back at progress made in the last five years, though, she comments that "it feels like a different university."

One significant change is the creation of a Disabled Students Cultural Center. Along with undergraduate student organizer Alena Morales in what is now the ASUC Disabled Students Commission, Savin co-led the fight to establish this space. To realize the Center, they held community town hall events, created multiple proposals, led rallies, and served on multiple committees such as the Disability Community Center subcommittee of the Vice Provost's Space and Capital Improvement committee.

Her activism was not limited to campus: when the elderly and people with disabilities were left to make their own arrangements during the PG&E power shutoffs in Fall 2019, Savin helped organize mutual aid networks so people who still had power could connect with those who needed electricity to charge wheelchair batteries and fill oxygen tanks.

As she gets ready to file her dissertation, Savin has already begun teaching at University of the Pacific's Sacramento campus, where she is assistant clinical professor in the School of Health Science's social work program. She is helping develop a recently created sub-specialization in diabetes care and management within the healthcare specialization of UOP's MSW program. For Savin, whose first exposure to the field of social work was as a pediatric diabetes patient, it feels like things have come full circle.