Disabilities are not binary. Why do we treat them that way?

Editor's note: The opinions expressed by the author do not necessarily reflect the opinions of the AAMC or its members. 

On a gloomy summer day in London in 2009, my family and I arrived fashionably late to an Azeema, or an Arab social gathering. The aroma of cardamom tea and Turkish coffee seeped through the house walls. A feast was awaiting us with a wide array of Arabic appetizers, sumac-based meat dishes, and the hostess’s infamous stuffed grape leaves. After a round of greetings, I began conversing with a charming lady whom I will call Khala Hoda. With a warm smile, Khala Hoda inquired about my experiences living in California, which led to my mentioning my hearing loss. She incredulously responded, “You have hearing loss? But you can hear me just fine!”

Khala Hoda’s reaction was all too familiar to me. Most people, upon discovering my significant hearing loss, cannot understand how I seemingly navigate the world without obvious difficulty. While I do have serious hearing loss, I am hard of hearing, not deaf. I maximize use of my residual hearing, supplement with hearing technology, capitalize on optimal acoustical environments, and rely on speech reading (colloquially referred to as lip reading) to communicate with others. To most people, my disability is invisible. 

More than 60 million Americans and more than 1 billion people worldwide have a disability, and the vast majority of them are — like mine — invisible. With my residual hearing, I am “too hearing” to be considered medically deaf but “too deaf” to be considered hearing.

Unfortunately, disability is often perceived this way: A person either has the disability or does not. In reality, disability is anything but binary and instead is highly complex, nuanced, intersectional, and diverse, correlating with a wide range of experiences. For instance, 85% of people with eye disorders have some sight, many people who use wheelchairs are able to walk sometimes, and learning disabilities (like dyslexia) present in spectra. Furthermore, disabilities can be short- or long-term, transitory or permanent, and can impact peoples’ lives to varying degrees at any given moment. Failure to appreciate the dynamic nature of disability can have profound consequences, not just for the individual trying to navigate their life but for society at large.

Binary categorizations hurt people with disabilities

All-or-nothing categorizations suggest that disabilities and chronic illnesses within the middle of the spectrum are somehow less challenging. Medical severity does not necessarily correlate with personal struggle. For example, hearing loss degrees are named mild, moderate, severe, and profound, which, in practice, correspond to the inability to hear speech, a vacuum cleaner, a concert piano, and a chainsaw. Whether realized or not, the language used to categorize disability may influence the way patients are diagnosed and how they view their disabilities. Binary categorization can also discourage people with “milder” disabilities and chronic illnesses from seeking support and exacerbates widespread “ableism” — discrimination against people with disabilities — and stigma, potentially resulting in negative long-term health consequences. 

Sometimes, when someone says to a person with a disability, “You appear normal,” the intent is to pay them a compliment. But other times, whether intentional for not, such a remark seems to imply that the person disclosing the disability is exaggerating or faking the disability. 60% of Americans with disabilities feel that others have questioned their disabilities. Doubting disabilities is not only demeaning but also insulting. Despite comprising 30% of the professional workforce, most people with disabilities do not disclose their disabilities to their managers, teams, or human resources departments because such disclosure may involve divulging personal conditions, swallowing pride, spending a tremendous amount of time to explain the disabilities, and expending extensive emotional energy. Having to constantly prove that one has a disability often prevents securing the proper accommodations and support. 

From my personal experience, people are almost always more helpful when they “get” it, which is generally when the barriers are visible. Because most barriers are not visible or immediately obvious to others, many steps must be initiated to convince others of the presence of a disability. Even with accommodations, people with disabilities can be at a significant disadvantage, since, at best, accessibility addresses access — equality, not equity.  

Practical communication tips 

Accommodation and inclusion demonstrate an acknowledgement that disability-related struggles are real and show genuine compassion, consideration, and care. Navigating a world not designed for people with disabilities is difficult, and small steps can go a long way. Here are some suggestions on practical communication tips and potential long-term solutions:

• Do react supportively and unquestioningly to a disability disclosure.
  • Thank them for sharing. Ask if there is any way you can be of assistance or make things easier for them. Most importantly, believe them!
  • Recognize that people have different disclosure comfort levels. You may be one of the first people for them to disclose to. Your reaction may have lasting impacts on their confidence level.
• Do not disclose someone else’s disability without permission. 
• At work, ask how you can make the environment more accessible and the team more inclusive. 
• Avoid referencing the one person you know who has a similar disability unless there is something relevant to that person. 
  • For example, “My grandfather has hearing loss too!” is not terribly helpful, but "My friend is also passionate about disability advocacy!” might be. 
• Do not describe people with disabilities as inspirations for getting through their daily lives.
  • People with disabilities are often pitied or described as inspirational — a phenomenon described derogatively as “inspiration porn” by members of the disability community.
    • Inspiration porn is separate from inspiring work or impressive achievements by those with a disability.
    • Read Joseph Shapiro’s book, No Pity: People with Disabilities Forging a New Civil Rights Movement, watch “Crip Camp: A Disability Revolution,” and learn about the disability rights movement.
• Do ask for guidance around language to describe a disability. 
  • Ask what language people prefer to describe their disabilities. Some people like identity-first language, such as disabled, while others may wish to be described as a “person with a disability.”
  • Phrases like “differently abled” are well intentioned but do more harm than good, because they reinforce stigmas about disability by implying that there is something wrong with having a disability.  
  • The phrase “a person without disability” is preferable to “normal.”
  • The term “handicapped” is considered offensive.
• Do not assume people feel comfortable discussing or answering questions about their disability.  
  • Even if somebody is open about a disability, there is a time and a place to ask questions. Be aware of settings (e.g., public vs. private). 
  • Ask for permission before asking questions. Give people a polite way out of having to answer questions. 
  • If possible, do your research before asking about a disability.
  • Recognize that people may not want to talk about their disabilities, as it can be exhausting to constantly have to answer questions.
  • Misplaced curiosity can invade personal privacy.
• Be proactive about accessibility when planning for events, work environments, and classes.
  • Assume at least one person will have a disability, and plan accordingly whether or not anyone discloses.
    • When sending emails about events or interviews, provide a contact person for accommodation requests: “Please contact xxx (name) at xxx (email) by xxx (date) for any accommodations and other requests.”
    • Implement the accommodation requests.
    • If the reason behind an accommodation request is not obvious to you, do not ask why somebody needs it. 
    • If you know someone has a disability, privately ask in advance if there is anything you can do to make an event more accessible. 
    • For the classroom, consider Universal Design for Learning and create multisensory experiences.
    • Consider the accessibility of the broader location.
      • Are there accessible parking spaces? Push door buttons and ramps? If flights and hotel rooms are required, consider accessibility.
• Provide open captions for all videos and speakers. Turn on captions when available.
• Provide written descriptions of photos.
• Ensure that documents are accessible to screen reader software.
• Consider noise and potential stimulation that may overwhelm someone.

Long-term solutions

• Normalize conversations around disability. Make disability an integral part of justice, equity, diversity, and inclusion conversations. Identify ways to remove barriers.
  • Increase representation of people with disabilities at work and schools. People with disabilities are grossly underrepresented in the field of medicine.
  • Evaluate inclusion and accessibility practices of programs, companies, schools, and social activities to address barriers that contribute to disparities among people with disabilities. Eradicate barriers affecting admissions, interviews, and job offers.
• Find alternative medical terminology to describe disability besides — for example — mild, moderate, severe, and profound. Consider definitions that highlight the distinctions between levels without implying personal difficulty. 
  • If you are a doctor, highlight that disability terminology does not reflect the struggles people face and that each person has a unique experience. Consider the social model of disability, not only the medical implications.

Treating disability as something that occurs along a spectrum will help transform the way society views and empowers people with disabilities. As the world prioritizes social justice, I hope that the public starts to actively include the largest minority in America — people with disabilities — in conversations about justice, equity, diversity, and inclusion.