Written by: Feng Yifan
American AIDS Conference USCHA 2025 There is a thought-provoking workshop, Long COVID Justice Gabriel San Emeterio lecturer. He focused on the intersection of “Disability Justice” and AIDS care, reminding us that the key to turning justice from slogans into processes is not how beautiful it is, but how to do it. Gabriel’s starting point is straightforward: centered on the affected persons, especially the most affected and most overlooked ethnic groups. Following the context of the Denver Principles and the Meaningful Involvement of People with HIV/AIDS, MIPA, he advocates that infected people are not only service objects, but also collaborators in policy and service design. Therefore, the workshop first clarifies what “obstacles” are, how competencyism works, and how double stigmas are superimposed, and then talks about the governance challenges brought by chronic viral infection; finally returns to “how to write principles into the process.” One sentence summary: Learn a set of methods that can be used when you can do it, take it away, and go back, so that “no one is left behind” is no longer just a slogan on the wall, but a daily life in documents, meetings and services.
Re-draw the boundary between “obstacles” and “justice”
Gabriel advocates re-drawing the boundary between “obstacles” and “justice”. “obstacles” are not personal flaws, but places where people are stuck in real environments. It may be visible or invisible; it may exist for a long time or fluctuate over time. The key lies in how society and institutions amplify or buffer restrictions. This also makes “Ableism” manifest: we often use the invisible ruler of “can work, whether it looks like ‘normal'” to measure value; this ruler superimposes racism, capitalism, and colonial history, which puts many people at a disadvantage from the beginning. When competencyism encounters AIDS stigma, the superposition effect is more obvious; people with physical and mental disorders and infection identities often suffer higher discrimination, have lower medical trust, and are more likely to encounter interruptions in care. What’s even more difficult is that many symptoms cannot be seen, such as long-term fatigue, cognitive decline and memory difficulties, sleep disorder, emotional exhaustion, etc., are often misunderstood as individuals’ “not working hard”. The latest data from the United States shows that nearly 50% of people living with AIDS in the United States have at least one disability or disorder, among which “action” and “cognition” are the most common; people who are in poverty and homelessness have a higher proportion of disability. The first step is to admit that this invisible measure does exist; the second step is to write it into risk assessment and process design to avoid losing these potential service users at the entrance.
Stress test for aging: mental health, fatigue, chronic pain
Currently, more than 50% of people living with AIDS in the United States are over 50 years old; by 2030, this proportion may approach 70%. This is the result of advances in AIDS services and medical care, and it is also a stress test for the care system for the elderly. The dilemma of long-term survivors of AIDS is often not the amount of virus, but the accompanying psychological and emotional stress, social isolation, material use risks, and the inability to ensure housing and food will deepen the risk of disability and reduce their quality of life. Parallel to disability is higher depression and anxiety; the prevalence of self-reward fatigue among AIDS-infected people has fallen from about 50% to 80% across studies; some studies have also found that chronic pain affects 40% to 80% of infected people, and neuropathological pain is the most common, especially women and elders suffer more obvious pain, and it is difficult to manage such pain. Gabriel also recommends integrating mental health into routine services, combining rehabilitation, functions and pain management to allow non-drug and drug treatment services to be paralleled; and calls for more reasonable and convenient measures in the workplace and campus environment, such as flexible attendance, task segmentation, and long-distance options. Service assessment should also shift from “how much has been done” to “whether you can complete daily tasks”, such as whether you can take care of yourself, maintain social interactions, and take care of your family.
Dynamic care mode: COVID-19 and chronic diseases after infection
Speaking of the volatility of the obstacles, Gabriel took “Long-COVID” as an example. The World Health Organization pointed out that the symptoms of long-term COVID may only appear after recovery, or may continue all the way from the acute phase, or be expressed in a repeated fluctuation. Common symptoms include fatigue, shortness of breath and cognitive abnormalities, such as difficulty maintaining attention, slow thinking and memory.
Compared with the situation of the COVID-19 pandemic, the care system of elderly infected people needs to be changed to an adjustable and collaborative care model: outpatient and tracking should be able to use long-distance options and can be rescheduled within an appropriate range; infectious departments, neurological or physical and mental medical care, rehabilitation and functions, pain clinics and social workers jointly establish a care team; social resources such as housing, transportation and subsidies are included in social prescriptions; and the fluctuations in “that today, not necessarily tomorrow” will allow the norms to reserve flexibility.
Toolbox and action route: collectively accessible to affected leaders
In addition to problem diagnosis, Gabriel also provides tools available on-site. The first is “collectively accessible” inspection:
- Whether the information is easy to read, the language and version are complete, the characters are of little quality, the layout is clear, and the key points are obvious;
- Is the space good? The movement is smooth, the seat and sensory load are friendly, and the waiting process can be relaxed;
- Whether the process is easy to understand, the referral threshold is not high, the reply time limit is reasonable, and the path to seek help is clear;
- Whether the time is easy to discuss, provide flexible outpatient clinics, do not punish absences, and support remote services.
The second is to turn “the most affected persons lead” into daily life: let infected people and physically and mentally disabled people participate in service design and evaluation, and normalize education and training for removing stigma and mental health screening; in the workplace, functions and quality of life rather than simple output are used as the main indicators.
The third is to strengthen the evidence of self-management: infected people can use logs to record daily fatigue, cognitive function fluctuations, chronic pain changes, medication time, and take them to the outpatient clinic to communicate with health care and social government units, and also serve 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 relax and the power is willing to divide, it can become a working method that can be started today.
This article isTaiwan Care Foundation of ConsortiumCooperate with Infection
