During my summer with Long Covid Justice, I worked in health advocacy to expand the organization’s network of contacts and assist with developing educational curricula to amplify the voices of those affected by the ongoing pandemic. I also contributed to their Needs Assessment and Action Plan project to improve the experiences of three key populations in NYC who had been identified as needing the most support with long Covid — transgender people, people living with HIV, and children and families. Through this action plan, Long Covid Justice plans to improve the patient experience through advocating for increased provider education on chronic illnesses such as LCAD and building vertical systems of care that bring together specialists to holistically support patients experiencing chronic fatigue and inflammation.

My work on these projects supported the organizational objective of increasing awareness and support for LCAD by expanding horizontal access with provider education that decreases stigma against Covid and increases LCAD competence across the health care system. I also contributed to the grassroots development of LCAD provider networks and coalition building between various disability justice advocates, federally funded research studies, and local public health organizations. I created an extensive contacts list of researchers, care specialists, and key informants currently doing LCAD work and a database of resources for patients, caregivers, and providers to access further support and education to best manage LCAD symptoms and continuous care.

My internship at Long Covid Justice was the perfect opportunity to blend my skills from both my social work and public health studies. My social work training helped me analyze how deep-rooted systemic oppressions greatly exacerbate patient experiences of Long Covid and associated diseases. Just as Long Covid Justice’s mission focuses on centering racial, social, economic, and disability justice, the COVID-19 pandemic’s unequal impact of mass disability and death in marginalized communities was apparent throughout my work this summer. In particular, as two of the key populations for our Needs Assessment and Action Plan were transgender people and people living with HIV, my knowledge and skills from my Social Work with LGBTQ+ clients came in handy in contextualizing the impacts of Covid on these communities that had previously been left behind in policy decades ago in the HIV/AIDS epidemic.

During this internship, I was also able to implement knowledge gained from public health courses including Designing Public Health Interventions and Health Promotion Theory. I applied skills including network mapping and coalition building as well as theories around promoting behavior change and health literacy in accessible educational curricula. In all my projects, I focused on the key tenet of both social work and public health to promote agency in the populations we advocate for by centering the voices of those who are most deeply affected and are doing the work to increase health and access in their communities.

Despite Covid-19 being an ongoing pandemic that continues to create mass death and disability across the world, Long Covid and associated diseases continue to be under-recognized. Over the summer, I often struggled with the cognitive dissonance of balancing my strong passion towards disability advocacy work and the societal lack of emphasis on community care. I was excited about the incredible disability advocacy work my supervisor and colleagues have long been engaged in, but it was difficult to not be disheartened by the perseverance required in this space as Long Covid and other disabilities are not viewed with importance both publicly and within social work and public health spaces I occupy as a student.

With that said, it was incredibly inspiring to watch my colleagues continue to demand accountability from political and public health institutions whose policy choices do not center the voices of disabled and otherwise oppressed groups who are most impacted by the virus and its medical, social, and economic aftermaths. We joined forces with public health advocacy groups including Mask for America to meet with members of the CDC to encourage expansion of Long Covid research, public education, and access to care. It was clear in our meetings that there were political and legislative limitations to what we could fight for, as we encountered great resistance towards our proposals to stop normalizing Covid as another seasonal illness like the flu to prevent further stigma and dismissal of those affected long-term. The collective fatigue that we encountered as disabled advocates was exhausting yet inspiring and these were incredible teaching moments where I observed how we can effectively push back against institutional and oppressive forces who may limit our voices as health advocates.

This summer internship was a fantastic experience of moving from theory to real life application of my social work and public health knowledge as well as living my truth as a queer, trans, disabled person. Through the many challenges of health advocacy especially in the disability and Embodied Health Movement space, I learned firsthand the value of incremental change, coalition building, and self-preservation in advocating for the long-haul. As a queer person who has felt discouraged about advocating for my own health needs, it was especially electrifying to be able to table and advocate for our Needs Assessment at the trans-centered Transmission music festival during Pride Month. Even within the short span of the summer, I gained invaluable experience of learning to sit with the value of hope and network building needed to continue this intersectional queer disability work amidst institutional and legislative limitations in health policy. This experience inspired me to dive deeper into educating myself on historical health activism movements including the successes and struggles of HIV/AIDS, and I am excited to be taking a course on Health Advocacy this fall to build upon the knowledge and skills I gained this summer. I am incredibly grateful for the knowledge, skills, and community that I was able to build this summer at Long Covid Justice.