Rheuminations: Address Ableism, Improve Care for All Patients

The rheumatology con­sultation team was in full force that Friday afternoon—observing hands to solve diagnostic dilemmas. But unlike the usual physical examination, this time, our team was interpreting hand signals. Our patient was in the intensive care unit (ICU) and had been intubated for throat swelling. She was unknown to our healthcare system, so we didn’t have much information about her past medical history. However, she was largely alert and aware of her surroundings, and she wanted to tell us about herself. Slowly, she used American Sign Language (ASL) to communicate with us that she had a condition: l-u-p-u-s.

We were lucky to have that moment of communication, yet almost everything had to align perfectly to facilitate this exchange. That fortunate alignment of circumstances and contexts prompted us to think about a hidden issue within rheumatology: ableism. What is ableism, and how can we address it? Let’s rheuminate.

Ableism in Rheumatology

Ableism refers to discrimination or social prejudice against people with disabilities.¹ It can manifest in many ways, ranging from overt exclusion to more subtle assumptions that devalue the lived experience and autonomy of individuals living with disabilities. Regardless, it has important ramifications for care of people who require our attention in clinic. For example, ableism can distort our diagnostic reasoning and limit therapeutic options, thereby eroding trust. It can be so insidious that many times, we don’t even notice or realize that ableism is an issue. Yet it gets to the core of rheumatology.

To the surprise of few, many of the diseases we treat significantly increase the risk for disability. According to the Centers for Disease Control and Prevention, arthritis is a leading cause of disability in the U.S., affecting one in four adults.² Such conditions as rheumatoid arthritis, lupus, scleroderma, vasculitis and idiopathic inflammatory myopathies can and do impact mobility, communication, cognition and energy. Significantly, these are not just disjointed biological issues. The disabilities these conditions are associated with reshape a person’s entire experience of the world.

Worsening matters is that these disabilities may not always be visible or permanent. One patient with ankylosing spondylitis may use a cane, while another may appear outwardly mobile, but experience severe fatigue or pain. A lupus patient may lose her voice while in flares, like the woman we met in the ICU, but be able to sing opera during remission. This variability creates potential gaps for clinicians to unintentionally overlook or misunderstand the accommodations our patients need based on our beliefs and assumptions about what able looks like.

Ableism in Society

Of course, the issue extends well beyond medicine. Ableism is deeply ingrained in society, but seems more invisible because people may acquire disabilities later in life. In many ways, most of us will encounter and experience one or more forms of disability throughout our lives, even if it is temporary. Perhaps that is part of our angst: We imagine ourselves as healthy until we are not, and because of that, we may unconsciously distance ourselves from people who remind us of that fundamental vulnerability.

This reluctance to admit the prevalence of disabilities shows up in architecture, in public discourse, in media and in our assumptions about productivity and value. Disability has often evoked pity rather than pride, based on assumptions about limitations rather than adaptation. The lack of physical access, the digital inaccessibility of healthcare platforms, the societal discomfort with seeing assistive devices, all lead to marginalization of those who navigate the world differently.

This is a tragedy because health outcomes are inextricably linked to social structures, and ableism has measurable effects. In large part because of the world we have constructed, individuals with disabilities have lower life expectancy, higher rates of chronic disease and more barriers to accessing timely care.³ They are more likely to face housing insecurity, unemployment and mental health struggles. And yes, they are less likely to be included in research studies, even studies on the very diseases they experience.

The broader challenge, then, is not only how we treat people with disabilities in our clinics, but how we design health systems that treat disability as part and parcel of normal variation, rather than an exception to be managed.

Ableism in Training

While societal ableism sets the stage, our professional training environments often reinforce these dynamics in subtle ways. For generations, aspiring physicians with disabilities were counseled, either explicitly or implicitly, that they couldn’t or shouldn’t pursue medicine. Despite the Americans with Disabilities Act (ADA), many institutions maintained internal standards about what a qualified trainee looked like. Even when not fully articulated, those with disabilities were treated separately from, and sometimes as unwelcome members of, our community. This has resulted in a loss of talent, limited perspectives and a lack of empathy.⁴

Thankfully, that’s starting to change. Such organizations as the Coalition for Disability Access in Health Science and Medical Education have begun advocating for flexible technical standards, reasonable accommodations and a broader recognition that excellence in medicine is not confined to one physical or cognitive form. Advocates have made considerable headway in bringing to the fore that disability is a form of diversity, not deficiency.

In rheumatology, this shift in mindset is especially relevant. A physician who uses voice-to-text software may better understand the difficulty in communication experienced by those with tracheomalacia. A trainee with hearing loss who relies on captioning may be more attuned to how we speak in jargon. And a clinician who navigates the world using a wheelchair may notice architectural or attitudinal barriers that others overlook. If our workforce reflects more of the patients we serve, I believe that our capacity to care would deepen.

That’s why it is essential for training programs to build welcoming environments in all their forms: structurally, culturally and educationally. Necessarily, this means more than just accommodating disability when it becomes a barrier. It means proactively designing systems that honor different ways of working and learning. Our goal should not be to overcome disability, but to embrace it as an asset.

Advantages of Addressing Ableism

Confronting ableism is not only a moral imperative. On the contrary, confronting ableism improves care for all patients. By designing for accessibility, we make our clinics more functional for everyone. Consider, if you will, a rheumatology clinic with:

• Visual signage;
• Height-adjustable exam tables; and
• Flexible appointment structures.

These are not just useful for people with disabilities. They benefit older adults, parents with strollers and patients with temporary injuries. In fact, they would likely benefit rheumatologists themselves.

Moreover, acknowledging ableism sharpens our diagnostic lens. When we listen more closely and resist assumptions about compliance or capacity, we uncover insights that might otherwise remain unheard. It might be unfair to label a patient who misses appointments “noncompliant” if they are unable to drive safely. Or as we commonly see in our clinic, a patient who avoids injections may not be needle phobic. Rather, they may have limited hand mobility or visual acuity.

Interprofessional teams play a critical role in this transformation. Interpreters, both for spoken language and for ASL, enable communication that might otherwise be impossible. Occupational therapists, social workers and care coordinators bring vital expertise in adapting the environment, streamlining access to resources and ensuring continuity of care. By embedding accessibility into every layer of the clinical team, we move from reactive accommodations to proactive adaptation, which benefits everyone regardless of disability status.

In any case, teaching medical students, resident physicians and other trainees to think about these issues early helps foster vital habits of curiosity and compassion. We should normalize the idea at all levels that health is not a binary of sick and well, but a complex biopsychosocial mosaic of adaptation. I am confident that this will lead to more humanistic care, not only for those who are diagnosed with disabilities, but for every single one of us.

A Research Agenda for Addressing Ableism

This may sound well and good, but where commitment is most needed is in the research sphere. Addressing ableism in rheumatology requires dedicated investment in research. At the basic science level, we need greater attention to how chronic inflammation affects physical function, fatigue, cognition and disability over time. This necessitates a holistic approach that goes beyond improvements in disease activity scores as outcomes. Although the science is still early, emerging biomarkers of functional limitation or flare proneness could aid clinical prediction and personal goal setting.

On the translational side, patient-reported outcomes should be designed with disability in mind. Assumptions about the process of conducting clinical trials may need to be revisited. Are our surveys accessible to those with visual or motor impairments? Are we validating tools that matter to populations with disabilities, such as measures of independence, social participation or assistive device efficacy? What exactly comprises the complex relationship between pain and disability? These are not peripheral issues; they are central to improving care.

Even more challenging is addressing ableism in health systems research.⁵ At the health systems level, it is impossible to avoid investigating structural analyses of access. For example: how do patients with disabilities experience telehealth? How does insurance coverage intersect with disability status and treatment burden? What are the gaps in care coordination for patients who see multiple specialists, need home modifications, or rely on caregivers? These are urgent questions that demand answers.

Conclusion

Looking back, that encounter in the ICU was memor­able not only because it led us to an important diagnostic conclusion, but also because it was instructive. The patient devised a way to send us a message when no voice could be heard. On our end, it was about observing the hands not to detect synovitis, but to receive a story. Our patient, silenced by a flare that had inflamed her throat, still found a way to speak. She told us a critical aspect of her health. She spelled it out with care and clarity, overcoming the barriers that had been unintentionally placed before her. It was a moment of revelation and also of reckoning. How often, we debriefed afterward, do we miss these opportunities to connect? How many other patients go unseen or unheard because we haven’t built the systems or the mindsets to welcome their ways of sending us messages?

This is what ableism obscures. It blinds us to the possibility that communication, capability and contribution can take many forms. It narrows our understanding of what it means to function and to thrive. In doing so, it makes our care smaller than it could be. If we want to optimize care for our patients with rheumatologic conditions, then we must reexamine many of the latent assumptions we carry about ability. We must advocate to our healthcare systems to redesign our clinical space, our research agendas, our educational programs and more. And we must be willing to adapt ourselves in the process.

In the end, ableism is not just a problem for them. It distorts and limits our sense of self. It narrows our attention to what we notice, how we teach, who we train and, ultimately, what we value. Addressing ableism makes care more human, more curious and more just. Let us make room not out of charity, but out of a basic recognition that health, like language, takes many forms. Sometimes, to see what’s in front of us, we have to learn to observe the hands differently. Let us start by opening our minds and our hearts so that every patient, in every form, can be fully seen, fully heard and fully cared for.

Bharat Kumar, MD, MME, FACP, FAAAAI, RhMSUS, is the director of the rheumatology fellowship training program at the University of Iowa, Iowa City, and the physician editor of The Rheumatologist. Follow him on X (formerly Twitter) @BharatKumarMD.

References

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5. Nguyen TV, Kane S. Towards an agenda of action and research for making health systems responsive to the needs of people with disabilities. Lancet Reg Health West Pac. 2024 Oct 24;52:101225.