U.S. AIDS Conference USCHA 2025 featured a thought-provoking workshop, led by Long COVID Justice ‘s Gabriel San Emeterio. He focused on the intersection of “Disability Justice” and HIV care, reminding us: to turn justice from a slogan into a process, the key is not how well you say it, but how you do it. Gabriel’s starting point is straightforward: centering those affected, especially the most impacted and most easily overlooked groups. Following the context of the “Denver Principles” and “Meaningful Involvement of People with HIV/AIDS, MIPA,” he advocates that people living with HIV are not just service recipients, but collaborators in policy and service design. Therefore, the workshop first clarifies what “disability” is, how ableism operates, how double stigma stacks up, and then discusses the governance challenges brought by chronic viral infection; finally, it returns to “how to write principles into processes.” In summary: learn a set of practical, portable, and immediately usable methods, so that “leaving no one behind” is no longer just a slogan on the wall, but a daily practice in documents, meetings, and services.
Redrawing the boundaries of “disability” and “justice”
Gabriel advocates redrawing the boundaries of “disability” and “justice”: “disability” is not a personal defect, but the places where people get stuck in real environments. It may be visible or invisible; it may be long-term or fluctuate over time. The key is how society and systems amplify or buffer limitations. This also exposes “ableism”: we often use the invisible yardstick of “can you work, do you look ‘normal'” to measure value; this yardstick overlaps with racism, capitalism, and colonial history, putting many people at a disadvantage from the start. When ableism meets HIV stigma, the stacking effect is even more obvious; people with both disabilities and HIV status often face higher discrimination, lower medical trust, and more frequent care interruptions. More tricky are symptoms that are not visible, such as chronic fatigue, cognitive decline and memory difficulties, sleep disorders, emotional exhaustion, etc., which are often misunderstood as personal “lack of effort.” The latest U.S. data shows that nearly 50% of people living with HIV in the U.S. have at least one disability or impairment, with “mobility” and “cognitive” disabilities being the most common; those in poverty and homelessness have even higher rates of disability. The first step is to acknowledge that this invisible yardstick does exist; the second step is to write it into risk assessment and process design, to avoid losing these potential service users at the entry point.
Aging stress test: mental health, fatigue, chronic pain
Currently, over 50% of people living with HIV in the U.S. are over 50 years old; by 2030, this proportion may approach 70%. This is both the result of advances in HIV services and medical care, and a stress test for elder care systems. The difficulties of long-term HIV survivors often lie not in viral load, but in accompanying psychological and emotional stress, social isolation, substance use risk, and insecurity of housing and food, all of which increase disability risk and lower their quality of life. Alongside disability is a higher prevalence of depression and anxiety; self-reported fatigue among people living with HIV ranges from 50% to 80% across studies; some studies also find that chronic pain affects 40% to 80% of people living with HIV, with neuropathic pain being most common, especially among women and older adults, who experience more pronounced pain and have difficulty managing it. Gabriel also recommends incorporating mental health into routine services, combining rehabilitation, occupational therapy, and pain management, so that non-pharmacological and pharmacological treatments run in parallel; and calls for more reasonable accommodations in workplaces and campus environments, such as flexible attendance, task division, and remote options. Service evaluation should also shift from “how much was done” to “can daily tasks be completed,” such as self-care, maintaining social connections, and caring for family.
Dynamic care models: long COVID and post-infection chronic diseases
When discussing the fluctuation of disability, Gabriel uses “long COVID” as an example. The World Health Organization points out that long COVID symptoms may appear after recovery, may persist from the acute phase, or may present in a relapsing and fluctuating manner. Common symptoms include fatigue, shortness of breath, and cognitive dysfunction, such as difficulty maintaining attention, slower thinking and memory.
In light of long COVID, care systems for older people living with HIV need to shift to adjustable and collaborative care models: outpatient and follow-up should offer remote options and allow rescheduling within reasonable limits; infectious disease, neurology or mental health, rehabilitation and occupational therapy, pain clinics, and social work should collaborate to form care teams; housing, transportation, and subsidies should be included in social prescriptions; and acknowledge the fluctuation of “can do today, maybe not tomorrow,” allowing flexibility in regulations.
Toolbox and action roadmap: collective accessibility and affected leadership
In addition to problem diagnosis, Gabriel also provides tools that can be used on site. The first is the “collective accessibility” checklist:
- Is information easy to read, with complete language and versions, font size not too small, clear layout, and obvious key points;
- Is the space easy to access, with smooth flow, seating and sensory load friendly, and a relaxing waiting process;
- Is the process easy to understand, with low referral thresholds, reasonable response times, and clear help-seeking paths;
- Is time easy to negotiate, with flexible outpatient services, no punishment for absence, and support for remote services.
The second is to make “leadership by those most affected” a daily practice: let people living with HIV and people with disabilities participate in service design and evaluation, normalize anti-stigma education and mental health screening; in the workplace, use function and quality of life rather than simple output as the main indicators.
Third is to strengthen the evidential power of self-management: infected individuals can use logs to record daily fatigue, cognitive function fluctuations, chronic pain changes, and medication times, bring them to outpatient clinics to communicate with health care and social welfare units, and also use them as a basis for asking for leave from employers. In short, “Disability Justice (DJ)” must be implemented in every contact and every process; as long as the process is willing to loosen a bit and power is willing to share a bit, it can become a workable method starting today.
I found the emphasis on turning justice from a slogan into real processes really insightful. It seems like focusing on practical steps and involving those living with HIV directly could truly shift how services are designed and delivered for better inclusion.