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.
Comments
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.
I appreciate how Gabriel San Emeterio emphasized turning justice from a slogan into concrete action by centering those most affected. The connection to the Denver Principles and involving people with HIV as collaborators really resonated with me. It seems like a much-needed shift in approach to truly inclusive policy design.
Gabriel San Emeterio’s point about shifting justice from a slogan into an actual process really stuck with me. The way he ties the Denver Principles and MIPA into involving people with HIV as collaborators rather than just recipients feels like a necessary shift. I think the part about double stigma and clarifying what 'disability' means is especially important for policy work.
I really appreciated how Gabriel emphasized turning justice into a process rather than just a slogan. The focus on involving people living with HIV as collaborators instead of mere recipients feels like a crucial shift that could change how policies actually work on the ground.
I appreciated how Gabriel emphasized turning justice into a practical process rather than just talk. The connection to the Denver Principles and involving those living with HIV as collaborators really resonated with me. It seems like a much-needed approach to truly address the challenges faced by these communities.
Gabriel’s point about turning justice from a slogan into a process really got me thinking about the gap between policy and practice. Centering those most impacted makes sense, especially considering the layers of stigma people face. I’m curious how these practical methods actually play out in everyday service settings.
I appreciate how the workshop emphasized turning justice from a slogan into a real process by centering those most affected. The connection to the Denver Principles and MIPA provides a strong foundation for involving people living with HIV as partners, not just recipients, which seems essential for meaningful change.
I think the emphasis on centering those most impacted really resonates. The way the workshop breaks down ableism and double stigma feels like an important step toward making justice tangible rather than just theoretical. It seems like this approach could genuinely improve everyday policies and services for people living with HIV.
I appreciated the emphasis on involving people living with HIV as collaborators rather than just recipients. It seems like Gabriel's approach really challenges the usual top-down methods and makes justice feel more actionable and grounded.
Gabriel's point about moving justice from a slogan to a real process really stuck with me, especially the idea of involving people living with HIV as actual collaborators, not just recipients. I think starting with a clear definition of disability and acknowledging double stigma is crucial before tackling the governance issues.
Gabriel San Emeterio’s emphasis on turning justice into a process rather than just a slogan really resonated with me. The reference to the Denver Principles and MIPA highlights how important it is for people living with HIV to be active collaborators, not just recipients. I appreciate the focus on making daily practices more inclusive rather than leaving principles as abstract ideas.
I appreciate how the workshop emphasized turning justice into a real process rather than just a buzzword. The focus on involving people living with HIV as collaborators really seems like a crucial step toward meaningful change.
Gabriel San Emeterio’s focus on moving justice from slogans to actual processes is something I don’t hear discussed often enough. The way he connects the Denver Principles and MIPA to everyday practice, rather than just policy talk, really seems to push for genuine involvement of people with HIV.
Gabriel’s emphasis on making justice a process rather than just a slogan really resonated with me. I appreciate how the workshop starts by clarifying the meaning of disability and ableism before diving into actual governance challenges. The idea that people living with HIV should be collaborators, not just recipients, seems crucial.
Gabriel’s emphasis on moving from slogans to actual processes really resonates, especially where he talks about centering those most impacted. The reference to the Denver Principles and MIPA adds a layer of history that’s easy to overlook, but I think it’s crucial for understanding why people with HIV must be involved in designing their own care.
Gabriel’s point about turning justice into a process, not just a slogan, really stuck with me. Bringing the Denver Principles and MIPA into the discussion makes it practical, not abstract, especially when he talks about people with HIV as collaborators. The focus on making 'leave no one behind' part of everyday work feels both challenging and necessary.
I appreciate how Gabriel San Emeterio emphasizes turning justice into a process rather than just a slogan. The focus on involving those living with HIV as collaborators rather than just recipients really challenges the usual approach and seems like a meaningful step forward.
Gabriel’s emphasis on moving beyond slogans and actually centering those most affected felt especially relevant. The idea of making 'leaving no one behind' a daily practice, not just words, seems like a tough but necessary shift, especially when dealing with overlapping stigmas and policy design.
I appreciate how the workshop emphasizes turning justice into action by centering those most impacted, rather than just using it as a slogan. The focus on meaningful involvement of people with HIV feels like a really important step toward more inclusive policy design.
I appreciate how Gabriel San Emeterio emphasized moving justice from words to action, especially by involving those most impacted in designing policies. The connection to the Denver Principles and MIPA adds real weight to the argument that people living with HIV should help shape the systems meant for them.
I really appreciated the emphasis on centering those most impacted by HIV rather than just treating them as recipients. The way Gabriel ties disability justice to real, actionable processes rather than slogans feels like a crucial shift. It seems like this workshop provided some much-needed clarity around ableism and governance challenges in this context.
I really appreciate the emphasis on moving justice from a slogan to real action, especially the idea of centering the most impacted groups. It seems Gabriel's approach to involving people living with HIV as collaborators could reshape how policies are designed in a meaningful way.
I found Gabriel’s emphasis on involving people living with HIV as collaborators rather than just recipients really insightful. It seems like a meaningful way to shift policy from theory to actual practice. The connection to the Denver Principles gave the workshop a solid historical framework that helped me understand the ongoing challenges better.
I really appreciated how the workshop emphasized turning justice into concrete actions rather than empty words. The focus on centering those most impacted and involving people living with HIV as collaborators seems crucial for meaningful change. It’s encouraging to see practical methods being shared to make inclusion a real, everyday priority.
Gabriel’s point about turning justice from just a slogan into an actual daily process is really compelling. The emphasis on centering those most impacted, especially within HIV care, seems like a much-needed shift in approach. I’m curious how these practical methods work in real-world policy meetings.
I appreciate how the workshop didn't just stick to theory but moved into 'how to write principles into processes.' The emphasis on centering those most impacted, especially in policy design, seems like a crucial shift from the usual top-down approach.
Gabriel’s point about moving from slogans to actual processes really got me thinking. I appreciate that the workshop starts by clarifying what 'disability' means and how ableism works before jumping into practical methods. Centering the most impacted voices, especially in the context of MIPA, seems like it could make policy design much more grounded.
Gabriel San Emeterio’s emphasis on turning justice into a process rather than a slogan really resonated with me. The idea of involving people living with HIV as collaborators, not just recipients, seems crucial for meaningful change. I also appreciate how the workshop tackled ableism and double stigma head-on.
I appreciate how the workshop highlighted turning justice from a slogan into actual practice, especially by centering those most affected. The connection with the Denver Principles and MIPA really emphasizes the importance of involving people with HIV in designing policies, which seems like a vital step often overlooked.
The part about turning justice from a slogan into a process stuck with me, especially the emphasis on centering those most impacted. Connecting the Denver Principles and MIPA to real policy collaboration seems necessary if we want to address the double stigma around HIV and disability.
I really appreciated how Gabriel emphasized turning justice into a process rather than just words. The connection to the Denver Principles and involving people with HIV as collaborators instead of just recipients feels like a crucial shift that often gets overlooked. It seems like these practical methods could genuinely change how services are designed.
I really appreciated how the workshop emphasized turning justice into a process rather than just words. The focus on centering those most impacted, especially through the lens of the Denver Principles and MIPA, seems like a crucial step many discussions overlook. It’s encouraging to see practical methods highlighted to make these ideas part of everyday practice.
Gabriel's emphasis on turning justice into a process rather than just a slogan made me pause. The way he connects the Denver Principles and MIPA to actual policy involvement seems practical, especially for groups who are usually overlooked. It’s interesting how the workshop breaks down ableism and double stigma before getting into governance challenges.
Gabriel’s emphasis on turning justice into a process rather than just a slogan really resonated with me. The way he connects the Denver Principles and MIPA to practical, everyday actions makes the idea of meaningful involvement feel more concrete and attainable, especially for those who are often overlooked.
Gabriel San Emeterio’s point about moving beyond slogans and actually embedding justice in daily practices really resonates. The emphasis on involving people with HIV as collaborators, not just recipients, seems like a powerful shift. I’m curious how those portable methods translate in real-world service settings.
I really appreciated how Gabriel emphasized turning justice into an active process rather than just a slogan. The focus on centering people living with HIV as collaborators, not just recipients, feels like a crucial shift that could make a real difference in shaping policies and services.
I found Gabriel San Emeterio's emphasis on centering those most impacted really compelling. It seems like shifting from rhetoric to real action, especially through practical methods, is crucial for making justice in HIV care more than just words. The connection to the Denver Principles adds important historical context too.
I found the focus on turning justice into an ongoing process rather than just a slogan really compelling. The idea of centering those most affected, especially through involving people with HIV as collaborators, seems like an important shift toward meaningful change. It feels like a step toward truly inclusive policy design.
I really appreciated Gabriel San Emeterio's point about turning justice into a process rather than just a slogan. The focus on centering those most impacted, especially through frameworks like the Denver Principles, seems like a necessary step toward meaningful involvement. It feels like this workshop offers some genuinely practical ways to move beyond words.
I think the emphasis on turning disability justice from a slogan into daily practice really hits home. The way Gabriel San Emeterio highlights the involvement of people living with HIV in policy makes the approach feel much more grounded and practical.