https://orcid.org/0000-0001-8876-9620
Abstract
In this piece, I share my thoughts about how the field of public health can better understand the impact of intersectionality in disability, higher education and health care. Intersectionality can create a compounded burden that is only exacerbated in the midst of this pandemic. I begin by describing how my life changed at the onset of the pandemic in terms of my daily life, including the impact of shifting to online classes and rising racial tensions within our country. Next, I offer advice to those who are newly diagnosed with long term disabilities in self-acceptance and grieving. To conclude, I call for a shift in public health with holistic approaches and reducing the achievement gap while enhancing support provided by university offices for Disabled students. Being disabled is a part of who I am, not just a list of conditions on my medical chart.
When this pandemic started, I was a Black Disabled student living on campus with four roommates. Suddenly, I found myself living in that same apartment alone and in pain. Due to my chronic illnesses, including fibromyalgia, sciatica, and rotator cuff tears I require frequent treatment, including interventional pain management, acupuncture, and osteopathic manipulation. As the pandemic worsened and pain procedure suites were commandeered, I could no longer receive these interventions, and, predictably, my pain increased. With no other effective treatments available to me, I confronted the daunting realization that I faced many isolated, pain-riddled days.
Full-time virtual classes highlighted the now inaccessible resources and lack of community available to me as a Black, Disabled student on campus. However, in the midst of that loss, I gained perspective. I learned that asynchronous classes feel like binging ‘Academic Netflix,’ making it harder to remain engaged. I identified a preference for synchronous classes, where the teachers and students engage through real-time discussion and activities. I see now how staying on campus has made online learning easier due to the accommodations I receive in my dorm room like a sit to stand desk, ergonomic chair, and upright mouse. I also learned not being in the classroom environment increased accessibility to my bed to rest throughout the day.
In addition to these new learning experiences, I found myself, a Black student, confronted with continuing and pervasive systematic racism in America, embodied by the killings of George Floyd, Breonna Taylor and so many others. In a student government Zoom meeting, Black students were asked how faculty could be of support during the social unrest. On a 10 out of 10 pain day, I garnered the energy to join the call, and suggested that faculty reach out and check in with Disabled students. As I was speaking, two ‘Zoom Bombers’ infiltrated the meeting, calling me the ‘n’ word and spewing expletives, as other attendees responded with an initial shocked silence. In that moment, I felt a visceral connection to every ancestor who was ever called the ‘n’ word out of hate. As the Zoom room erupted into reactions ranging from despair to rage, I simply stated, ‘I reject your words’, placed myself on mute, and disengaged in order to preserve my already taxed energy reserves.
Following this incident, I directed my energy towards advocacy for Disabled students, especially those of color. The support of the university leadership and student government was remarkable. I met with members of campus leadership shortly after the Zoom incident, providing me with a safe space to be open and honest with them about my needs and those of other Disabled students following the incident. Student leadership reached out to apologize, which eventually led to my appointment as Underrepresented Student Officer for the University of California Student Association. In this role, I amplify and empower the voices of Disabled students, whose perspectives are often neglected. We are silent and unseen, especially among underrepresented and historically marginalized communities (URM). We are a minority within URM communities without dedicated diversity, scholarship, or mentorship programs, perpetuating continued inequality within diversity, equity and inclusion. This contributes to failures to address the needs of students with multiple marginalized identities– in my case, being both Black and Disabled.
The experiences of Disabled students who are also URMs have varied widely during the pandemic. Some live with family, struggling to keep up with peers, but supported by loved ones. These students may experience limited or unreliable computer or internet access, coupled with pre-existing lack of community, and poor awareness of available resources as a catalyst of powerlessness, complicating the already difficult ordeal of accessing services as a student with disabilities. Educational barriers must be addressed to increase support for accessibility by learning from these students’ experiences. The feedback from these efforts could result in identifying new modalities of support for success, especially for Disabled students who are also from URM groups.
Being Black and Disabled results in a heightened risk of racist and ableist slurs and unjust killings along with increased disease burden of COVID-19, including magnified effects of health inequities, barriers to accessing COVID tests, and other resources in a timely manner, all contributing to an increased rate of mortality from infection among Black and Brown communities. Fear and delayed care-seeking may play a role in exacerbating these health disparities, given the history of racism and discrimination towards minorities in healthcare. It is clear that while COVID-19 and disabilities themselves do not discriminate on the basis of race, systemic racism, which leads to vast disparities in social determinants of health, causes both COVID-19 and chronic illnesses to disproportionately affect those from URM groups. Indeed, I avoid emergency rooms when my pain flares to avoid being called drug seeking because of my disability and my skin color. Public health and medical systems must work to create systems that support all Disabled individuals, including those from marginalized racial and ethnic groups.
We must enhance access to critical services, including healthcare access for diagnosis and treatment as well as state-sponsored social services, such as food stamps and housing assistance for Disabled students, especially those from URM communities. One critical service is Medicaid, known as Medi-Cal in California. Community health clinics have advocates for Medicaid, but such resources are not available on all college campuses. In 2020, my student health insurance plan covered 143 claims totaling $111,588.41. In the United States, wealth and employment status often determine whether or not one has health insurance and one’s ability to afford co-pays, defined as the additional patient cost-sharing required by insurance companies for some health services. Without Medi-Cal, I would have been responsible for $4422.05 in co-pays as a student. Some parts of the world have a socialized medical system where all costs are covered for their care. URM communities in the United States face health inequities, increasing the burden of disability. Disabled students need to be made more aware of Medi-Cal and Medicaid supplemental insurance options. How many Disabled students are suffering under the weight of co-pays without being made aware of the benefits of Medicaid as a secondary insurance?
Disabled students chose their college not just for the school but also for their healthcare. I chose UCSD largely because of UCSD Health. However, I think that most colleges and universities don’t realize that their health care system is a potential recruiting tool for Disabled students. Campus health systems must consider how they will support Disabled students. During this pandemic, it is much harder for Disabled students due to the increased risk of serious illness or death if they contract COVID-19. Access to telemedicine appointments must be expanded for Disabled students, especially for mental health, pain management, and rehabilitation services, during this pandemic. For communities without internet connectivity, government programs to improve WiFi and cellular networks along with distribution of free laptops will expand the reach of telemedicine during the pandemic and beyond.
The effects of intersectionality are evident, as minorities and persons with disabilities continue to be disproportionately affected by our pandemic. We must understand that the individual-level barriers of a white male will be different than those of a Black woman, even if they have similar disabilities or chronic illnesses. The process of self-acceptance is a critical consideration, as is awareness of identity-specific barriers that may lead to difficulty accepting help or accessing services. When my Fibromyalgia symptoms began in 2015, I was depressed, overwhelmed, and scared, as I had never before experienced relentless pain. I got through the bad moments by proactively committing each day to do what I can to make my quality of life better through eating healthy, staying as active as possible, and engaging in self-care. The diagnosis with a disability is a drastic change that requires considerable adjustment and psychological healing. It is critical that people, especially people of color, know that they are not alone in this and that healthcare and public health professionals address both physical and mental health.
Public health officials speak about COVID-19 prevention, but what happens if a student recovers from COVID-19 to live with chronic disabilities? Combining the access to mental health treatment, wellness activities, and medical care would aid with integration of the mind and the body that is necessary after such a disease plays havoc on one’s mental and physical well-being. When I first saw a clinical psychologist to speak about the constant interplay of my emotions and pain, it was an unnatural conversation that always shifted back to my emotions in absence of the pain due to the psychologist’s discomfort and lack of competency with chronic physical illness and disability. I was diagnosed with Fibromyalgia during an abusive marriage and in a way, it is both the worst and the best thing to come from that period of my life. The person I was then is gone, and I have grown to love the resilient, strong survivor that I am today who thrives in spite of the symptoms and barriers that I face. Nevertheless, the transition was difficult. My doctor recognized what I was dealing with, but a referral to pain psychology was severely delayed, as there was no integration of care. Likewise, the diagnosis of a post-COVID related disability may coincide with the loss of loved ones, increased isolation or other trauma; true healthcare integration has the power to bring together the mind and the body in how they move through the therapeutic process.
Supporting the mental health of those of us who are Disabled, such as access to health and rehabilitation psychology, leads to self-acceptance, which aids in self-advocacy to obtain the tools to be successful in college and life. We are never taught as Disabled students that our voices matter, nor how to reclaim our voices, as ableist attitudes have fostered an unspoken belief that we do not belong in higher education. Self-advocacy is critical for newly diagnosed students as they must be transparent with disability services and their care team about their needs. In higher education, disabilities are viewed as problems that require accommodations and not as a community of people who have a unique culture and identity. The educational system has a critical duty to us who identify as Disabled to close the achievement gap while amplifying the perspectives of people with disabilities. The Disabled community has faced a history of discrimination, eugenics, and erasure. This promotes a narrative of exclusion and pity, telling Disabled people they are incapable, and their voices don’t matter, thus maintaining ableist systems. This is often exacerbated in the collegiate environment by obstacles in receiving accommodations needed to survive and not having a community we need to thrive.
In public health, the community and the culture of Disabled people should be amplified to give collegiate environments a model to follow. I celebrate who I am in the ‘Crip’ culture. It is this awareness that allows me to call for change. Supporting Disabled students is not just about matching a student’s diagnosis to accommodations, but rather calls for a more holistic model to address housing and health disparities facing this population. This can be achieved through dedicated living and learning communities, Disability cultural centers and Offices of Health Advocacy and Support to connect them to resources they need to thrive. Additionally, peer advocates can help newly Disabled students with concerns ranging from adjustment to accommodations. The time is now to support Disabled students, especially those who are also URM. They need easy access to accommodations, widespread accessibility, and a community which enhances their ability to thrive, furthering their competency to complete their education, enter into their careers, and close the achievement gap. This is more important now than ever to close the gaps in supporting people with disabilities as we look to the survivors of the ‘battle of COVID-19’. Once these people are off this ‘battlefield’, they will be left unknowingly to begin life with the scars of new disabilities. Our actions now will determine the support they will have in the future.
Acknowledgements
Thank you to Dr. Sami Schalk of the University of Wisconsin, Madison; Dr. Victoria Ojeda of the University of California, San Diego; Dr. Ebony Caldwell of Howard University; Dr. Emily Lund of the University of Alabama; Nicole Lee Schroeder of the University of Virginia; Nalan D. Kivrak of the University of California, San Diego; Yi Chen of the University of California, San Diego; Emily Baltz of the University of California, San Diego; and Dr. Kristen Choi of the University of California, Los Angeles for their advice and editorial assistance in the process of bringing this paper together. I would also like to thank my mentor, fellow UCSD alum who co-produced and co-directed the Oscar nominated documentary film, Crip Camp. Jim LeBrecht. There are truly no words for how grateful I am to have met you and to have had your voice in the editing process. Your work opened my eyes and continues to inspire my disability advocacy as a part of the Disability community. Special thanks to my mother, Christine Nolan, who helped me bring literary beauty that we are both proud of to the conclusion and for always being there in my journey. I love you, mom.