Talk to her 

I was in high school, accompanying my aunt, who is blind, to her doctor’s appointment. “Ms. V, right this way,” the nurse called into the waiting room.  

I linked arms with my aunt, guiding her around the unwieldy equipment lining the hallways and into the examination room. When we settled in, the nurse looked to me: “Please confirm her name and date of birth.” 

“Oh, she can speak for herself,” I said, taken aback by the assumption that my aunt couldn’t independently interact with her own healthcare providers. The nurse uncomfortably turned to my aunt and repeated herself slowly and loudly, as though she didn’t quite believe that my aunt could answer the question.  

Just talk to her normally, I thought to myself, becoming increasingly frustrated by the interaction. It was then that I realized that while I saw my aunt as a fierce disability advocate and brilliant teacher at a school for children with multiple disabilities, others might have unconscious biases precluding them from seeing her in the same light. 

My aunt’s experience is not unique. One in four adults in the United States have a disability. Disabled individuals consistently report dissatisfaction with the information they receive about their medical conditions, the costs of care, and the ease with which they are able to visit a healthcare provider. Disabled individuals are more likely than nondisabled individuals to report ineffective communication with healthcare providers. As providers, the onus is on us to communicate more effectively with patients and to break down barriers that have previously isolated many disabled individuals from the healthcare system. 

Here are some simple tips to implement to better care for our patients: 

1. Speak with disabled patients the way you speak with all patients. 

Speak directly to the patient, and not to family members, friends, or caregivers who may be accompanying them. Converse in a natural volume and tone (i.e., avoid speaking slowly or loudly). Speak to the patient in an age-appropriate manner (i.e., don’t use “baby talk” with a disabled patient). If you believe you might not be communicating effectively, ask the patient for their preferences.  

2. Use respectful and inclusive language.  

Avoid condescending euphemisms for disabilities, such as “differently abled,” “challenged,” or “handicapped.” Work to learn terms that are preferred by disabled individuals in the status quo (i.e., “wheelchair user” instead of “wheelchair bound”). 

3. Learn about the two major linguistic styles to address disability. 

Many disabled individuals prefer identity-first language over person-first language. Identity-first language puts the identity before the person (i.e., a deaf person, my visually impaired aunt), while person-first language does the reverse (i.e., a person with autism, my friend who is blind). Identity-first language is often used to celebrate disability pride and combat biases. Nevertheless, there is no unanimity on which style is better; it’s always safest to ask your patient if they have a preference.  

4. Work to eliminate your biases. 

Ask patients about their careers, hobbies, and/or families to build rapport and perceive your patients as more than their disabilities or health challenges.  

When in doubt, always ask your patients: they are the experts on their lived experiences and preferences. 

This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.