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.
