According to Merriam-Webster, disability is “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”1
However, I don’t like using the word impair to describe a person’s body and/or mind. The term impair means to diminish, weaken, or worsen.2 And when we say that disability impairs our life experiences, it suggests two things: First, it imbues disability with a negative connotation. Second, it suggests that our disability is the reason for or cause of any negative life experiences.
This is inaccurate. Disability itself is not the cause of our negative experiences, as we will come to learn in the next few chapters. Instead, it is the way that our society is built to favor non-disabled people and discriminate against disabled people that causes us to be harmed.
If something as basic as a dictionary definition can get it wrong, I knew we had to try to change it.
A few years ago, in partnership with the Link20 initiative of the Ruderman Family Foundation, a few disability advocates and I drafted a note to try to change Merriam-Webster’s definition of disability. We were inspired in part by Drake University graduate Kennedy Mitchum successfully petitioning Merriam-Webster to change the definition of racism to incorporate systemic oppression in 2020.3
Unfortunately, we did not receive a response to our letter. But who knows—someone at Merriam-Webster read that letter. Perhaps they learned something new. Much of advocacy work looks like this: planting the seeds for work that others will take on in the future. Even if we do not achieve the original goal, it can bring about wins that we may not know about for years to come. This letter was the first of many I’ve drafted to my elected officials pushing for change and to corporate leaders urging them to champion disability inclusion, some of which have been very effective. At the very least, discussing definitions with our friends, family, and colleagues helps to widen the circle of awareness.
I define disability as a health condition of the body and/or mind that impacts the way a person participates in daily activities. There is no negative value judgment in this definition.
In my presentations and speaking engagements, I choose to share the definition of disability from the World Health Organization (WHO), which states that “disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome, and depression, with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.”4
And yet, even though we have this shared definition of disability, our experiences of disability are diverse.
To highlight this, I want to share a story from my own experience. In June 2022, I attended a camp hosted by the United Brachial Plexus Network (UBPN), which brought together people who live with brachial plexus injuries. I met with doctors who served our community, parents and family members who loved us, and other people with the same diagnosis. One of my most significant moments during the camp was confronting the fact that my injury is most severe in my hand. My hand looks different. There’s a significant amount of muscle atrophy, and over time, my knuckles have hyperextended.
I remember telling one of my fellow camp attendees with a brachial plexus injury at breakfast, “I’m surprised that no one else’s hands look like mine.”
He responded, “Before I saw your hand, I didn’t know that our injury could look like that.”
While all of us had brachial plexus injuries, they all manifested in different ways. I realized that even if someone has a brachial plexus injury like mine, they might navigate and experience the world in a totally different way. To live with my paralyzed dominant arm, I adapted many daily activities, such as typing, tying my shoes, putting my hair up, and wearing a necklace. I have a steering knob requirement on my driver’s license, but I learned that many other drivers with brachial plexus injuries don’t. Similarly, life and access might look totally different for someone who can use both hands but has a disability that affects their ability to walk, see, or hear.
Although I’ve been in disability rights advocacy for years, I left the camp with a renewed understanding and appreciation of the sheer diversity of disability.
Disability doesn’t have “a look,” or at least not one look. Some of us are full-time wheelchair users. Some of us are ambulatory wheelchair users, which describes people with chronic illnesses or mobility issues who have some capacity to walk but who still use a wheelchair in certain situations. Some of us have speech- or vision-related disabilities. Some of us have disabilities that may not be obvious at all. Some of us have disabilities that are not always apparent but that may become apparent, such as the seizures in epilepsy, known as dynamic disabilities. As diversity, equity, inclusion, and accessibility (DEIA) consultant Catarina Rivera shared in a LinkedIn post on dynamic disabilities, “A person might need a mobility aid one day for their condition, while the next day they don’t. People with dynamic disabilities might be able to perform a task one day, and then another day be unable to perform the same task. This doesn’t mean they’re faking their symptoms.… People with dynamic disabilities want others to know that their conditions are real and that variation is typical.”5
There are one billion of us globally,6 and one in four American adults have a disability.7 As Dr. Amy Kenny, inaugural director of the Georgetown University Disability Cultural Center, sees it, “Disability is a culture and a community, a way of being that invites us to reimagine a new world where all access needs are met without condemnation or critique; where rest is not earned, but relished; where we recognize that we move, think, and communicate in beautifully diverse ways; and where we know that time is a construct. Disability drives innovation and teaches non-disabled people the inherent wisdom of our bodyminds. We, the disability community, are the future.”8
We are here, we are diverse, and we are more than Merriam-Webster’s dictionary definition.