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.
