Throughout Disability Pride Month, our Engagement Coordinator, Devon Anderson, connected with disability advocates across the country to talk about our collective work for the community at this time. This edited transcript shares her conversation with Jacqueline Luciano.
What does “taking good care” mean to you in these times?
JL: My heart is heavy during these challenging times of uncertainty and loss. Overexertion still leads to setbacks, worsening my limited capacity and non-apparent disabilities. I’ve had to set boundaries while unlearning internalized ableism and letting go of guilt. That’s why prioritizing a supportive, disability-centered environment is very important to me, especially during these hardships when community-care means so much.
Here’s what “taking good care” looks like for me right now:
- Practicing how and why to choose rest over productivity, since exceeding my energy envelope leads to harm
- Pacing and pausing, which often means saying “no” and sometimes disappointing others
- Expressing gratitude to loved ones, especially to God, my husband, children, and parents for their love and support
- Asking for help, something I struggle with during flare-ups
- Keeping electrolytes, supplements, assistive tools, and comfort items nearby
- Building genuine connections, locally and globally, with people in the disability and caregiving communities, as well as allies
- Channeling my anger and grief as fuel to keep fighting for Disability Justice, raising awareness, and continually learning about Long Covid and Associated Conditions, invisible/non-apparent disabilities and chronic illnesses
DA: What does being a part of the disability community mean to you?
JL: The disability community has been my lifeline, they saved my life. While medical institutions have failed me and millions of others, public health agencies continue to ignore the reality that Long COVID is a public health emergency. Pandemics are mass-disabling events, so what has actually been done for the disabled and marginalized communities? The ongoing neglect and failures are evident: lack of funding, Medicaid cuts, gaslighting, disability denials, erasure, and more.
The disability community offers what these systems don’t: truth, validation, connection, lived expertise, and care.
Thanks to the people with the same symptoms who spoke up and gave me the language for what I was experiencing. Yes, Long COVID is a patient-coined term. This community has shared stories, survival tips, what’s helped (and what hasn’t), and lived wisdom. I’ve met the most resilient, fierce, beautiful and brilliant people here! I’ve discovered guidance and answers that aren’t available elsewhere. Thankfully, I’ve had opportunities to share studies and insights to my providers to help manage my symptoms. Without the disability and caregiver community, I wouldn’t have known what to bring to my anesthesiologist and surgical care team during a recent surgery. Let’s be real, the onus should never be on the patient. This must change.
Being part of the disability community has helped me with my healing journey through creativity, self-reflection, and transformation. I thank History Moves for the opportunity to be a Narrative Architect for Listening for the Long Haul (a Long Covid oral history project) and Long Covid Justice for the support and communication training as a BIPOC fellow. These experiences and opportunities gave me a second chance at life, filled with purpose, hope, connection, and a space to be unapologetically and authentically me.
DA: How does this relate to community care and how you envision collective care in the community?
JL: I am here to pay forward the kindness, strength, and collective knowledge I’ve received. I’ve learned that community care happens through storytelling, movements, and creativity. These have been my lifelines, and I share them as we build a just future together.
Also, with my previous clinical nursing and regulatory work, I aim to educate nurses, doctors and healthcare workers on what I’ve learned, both as a patient and as a nurse. I wish I had received this kind of perspective and understanding 20+ years ago. Disability- and patient-led training and education would have improved the way I cared for others and helped me become a better nurse, as well as understand my own chronic conditions. Too many healthcare workers today still lack this critical training, and there is an urgent need to expand education that centers lived experience, accessibility, and equity. Due to my brain injury and brain fog, I often struggle to express my thoughts in full sentences, so I’m thankful to have discovered the therapeutic power of poetry. [Read Jackie’s poem on Community Care below]
DA: What part of the work are you involved with, and how are you carrying that work forward now?
JL: I have had the honor of contributing to projects with History Moves and Strategies for High Impact / Long Covid Justice that center disabled BIPOC and historically marginalized communities, including LGBTQIA+ and people living with HIV/AIDS. I’m also a Long Covid Advisor with NOND, National Organization for Nurses with Disabilities
The official website launch for Listening for the Long Haul is happening soon. Sign up for updates and to save the date!
I also helped co-organize Breathing for Justice, a webinar presentation that discusses intersections of Long Covid and Disability Justice. Additionally, I’d like to announce the formation of the Disabled Nurse National Solidarity Collective (DNNSC), a growing grassroots organization for multiply marginalized disabled nurses, nursing students, and nurse educators. If you are a multiply marginalized disabled nurse, nursing student, nurse educator, or nurse-adjacent person interested in joining the collective, please fill out this interest form.
These initiatives also embrace and practice the principles of crip time, which is essential for me, as attempting consistent work has resulted in significant relapses and post-exertional malaise (PEM).
As spoons allow, I aspire to continue more projects that identify how many people are living with Long Covid and that address the disproportionate impact of Long Covid on communities of color, persistent gaps in representation, and the need for creative outlets that empower survivors to share their lived experiences. We also need to close the gap between research and practice, which on average, takes 17 years for new evidence to become standard clinical care. That’s way too long, especially in the face of the ongoing Long Covid crisis, where we still lack biomarkers and targeted treatments. We are at a critical moment and we must urgently respond to this ongoing global public health emergency with community-led solutions rooted in disability justice.
I hope more people with greater access and resources will show up in solidarity. Millions of people living with Long Covid and/or ME/CFS, particularly those in the very severe stages, face endless barriers and profound limitations in energy and capacity, and no one should be left behind. I invite everyone to join this collective effort!
Community Care by Jacqueline Luciano
Create cross-solidarity movements; justice is care for all
Organize, it’s our collective call
Marginalized ≠ voiceless, broken, or small
Mutual aid helps us thrive and survive
Undo all isms, from ableism to capitalism
Nourishment shared selflessly, through testimony & wisdom
Intersectionally connected by shared oppression and pain
Together we grieve, and together we reclaim
You are loved as you are, unconditionally
Challenge systems, not individuals, let’s cultivate community
Authenticity protects, no need for disguise
Resist and remember: radical rest is where our strength lies
Energy is limited,
but we breathe for #DisabilityJustice, and nothing less.
Jacqueline E. Luciano (she/her) is a first generation Filipino-American, wife, and mother of two. She’s also a former Illinois Department of Public Health Surveillance Nurse and was working as a Regulatory Consultant until she became disabled by Long Covid and Associated Diseases (LCAD) in January 2022. Jacquie has experienced firsthand the challenges of navigating a complex healthcare system while battling Long COVID and Myalgic Encephalomyelitis (ME), both of which lack FDA-approved treatments. Her journey through these experiences has fueled a passion for reshaping public narratives and policies that have historically neglected disabled individuals and people with chronic invisible illnesses. Inspired by her own struggles, she strives for disability and racial justice, aiming to bring about positive change in healthcare and beyond. Her current projects are in collaboration with Long COVID Justice and MEAction, and she’s a Narrative Architect for “Listening for the Long Haul: A Living History of Long COVID”. Jacquie holds a Bachelor of Science in Nursing from Loyola University Chicago. Since encountering the benefits of modalities for her own lymphatic system, she aspires to be a holistic, person-centered Certified Lymphatic Practitioner & Integrative Health Coach. Jacqueline was a participating panelist in the 2023-2024 Disability & Health Webinar Series conversation on Long COVID and disability.