As a part of the Autistic Self Advocacy Network’s 2024 gala, we have the honor to share and uplift our remarkable awardees’ words and their service to the self-advocacy and disability community. We will be sharing their remarks for the first few months of 2025.
⁂
Thank you so much to Autistic Self Advocacy Network for this award — we are truly honored!
Part of why we started Long COVID Justice was to build solidarity across disability groups, and to make sure that Long COVID was not exceptionalized in decision-making around policy, research, and advocacy around disability. We do this because Long COVID is not unique, but is connected to other infection-associated chronic conditions, and is part of the disability justice movement more broadly. We are leading collective efforts to confront the Long COVID crisis, while centering racial, social, economic and disability justice, and our work is done by and for chronically ill and disabled people, our families and communities.
We are grateful to be connected to and working with groups like ASAN as we build power with our communities. This work is more urgent than ever, as we approach year 5 of this ongoing pandemic, and face the possibility of many more in our lifetimes.
Even as these pandemics continue to claim lives, we have been pressured to return to a “business as normal” that has never centered the needs of disabled people and people with complex chronic conditions.
Pandemics like these have disproportionately impacted already marginalized communities.
These disproportionate impacts are driven by the ongoing structural marginalization of Black, Brown and indigenous people, immigrants, queer and trans people, older people, poor and low-income people, disabled people, those who are imprisoned and those without access to stable housing.
We must end practices and policies that ignore, marginalize and deprioritize chronically-ill and disabled people, in and beyond pandemics.
We work towards research justice, community-accountable data, and truly equitable policy based on considerations of race and ethnicity, class, age, immigration status, gender and gender identity, sexuality, religion/spirituality, culture, family structure, incarceration, housing status, disability, and co-morbidities.
We are doing this through our ongoing work and have been asked to share a few highlights:
- Long COVID Essentials, a series of 30+ Spanish and English resources created in partnership with The Sick Times that have already been accessed by thousands of people. These are some of the first plain-language, accessible resources about Long COVID that are both patient and medical provider reviewed. Our materials are undergoing a thorough medical and patient review process to bring emergent research and mitigation practices to the public.
- Mask Ban organizing, engaging over 10,000 people in organizing against mask bans via strategic cross-movement partnerships with other groups at the forefront of pandemic justice and civil liberties.
- Launching an ongoing dialogue with the U.S. Centers for Disease Control (CDC) to advocate for patient and advocate-led recommendations to be incorporated into official guidance about prevention and more.
- Needs Assessment and Action Project (NAAP), the first city or state-level patient-led needs assessment for Long COVID in the United States, in partnership with CUNY School of Public Health.We will launch our research-based and patient-led Action Plan in 2025.
- Listening for the Long Haul is our 2 year long oral history project in partnership with History Moves at the University of Illinois-Chicago. This winter, we will launch a website featuring over 300 hours of oral histories conducted by trained Narrative Architects as part of the project.
- BIPOC Fellowship and Long COVID Communicators program. This project is currently in its second year, and provides material and capacity-building support to Black, Indigenous, and people of color disability justice activists, artists, and researchers doing work, organizing, and/or who are living with Long COVID and complex chronic illness. BIPOC Fellows build community & relationships, participate in a fully-funded communications training series, get 1:1 support for publishing op-eds & other writing, and deepen communication & narrative skills, increasing the visibility and power of BIPOC voices in the Long COVID landscape.
- The HIV Complexities Project is led by and for people living with HIV (PLHIV) and complex chronic conditions. The project includes a monthly online support group for PLHIV with complex chronic conditions, resources in English and Spanish for PLHIV in our Long COVID Essentials suite of health ed fact sheets, support for national networks of PLHIV to strengthen their capacity to include disabling complex chronic conditions in their work, curricula for HIV peer navigators, community health workers, providers and advocates, developed in partnership with the Citizens’ Public Health Literacy (CIPHER) project at Columbia University, and public health education to provide information on HIV and complex chronic conditions.
It’s a time with many challenges on the horizon. We don’t need to tell any of you how crucial this work is. The coming years will be very difficult, especially for the disabled, chronically ill and marginalized populations most affected by Long COVID, which already affects 400 million people worldwide. And we are heading into the next U.S. federal administration with virtually no infrastructure around Long COVID prevention, care, treatment or support, and research. Public and provider education is minimal, and COVID-19 is being allowed to spread unabated even though each infection and reinfection puts more people at risk of harm.
We are honored to work alongside ASAN and other disability groups as we face what’s next. Feel free to reach out to learn more about our work or say hi by emailing, visiting our website, or signing up for our newsletter and updates.