As a wheelchair user and professional disability advocate, my greatest passion is ensuring people have access to high quality, culturally competent services and opportunities, especially those within the Disability and Chronic Illness (DCI) community. This includes ensuring suicide prevention services and supports are accessible and inclusive of the DCI community.
In my experience, many people do not have a clear understanding of who is included in the DCI population. When I say disability, I am referring to a physical, mental, or developmental condition that impacts a person’s ability to engage in certain tasks, actions, or activities in daily life as nondisabled people typically expect. For example, some common disabilities include autism, blindness, cerebral palsy, Down Syndrome, muscular dystrophy, post-traumatic stress disorder (PTSD), spinal cord injury, and traumatic brain injury.
Similarly, when I say chronic illness, I am referring to a condition that lasts three months or more and requires ongoing medical attention that may impact a person’s ability to engage in certain tasks, actions, or activities in daily life as non-ill people typically expect. Some chronic illnesses include anxiety, depression, cancer, Fibromyalgia, high blood pressure, kidney disease, lupus and Parkinson’s Disease.
This is the first article in a series: Working With the Disability and Chronic Illness Community
I use these definitions because all bodies are naturally diverse, but it is the non-DCI body that people judge diverse bodies against. Virtually everyone knows someone with some sort of disability or chronic illness even if we don’t recognize their experience as such. While at least 27 percent of U.S. residents have at least one DCI, statistics tell us that, as a community, we are not meeting DCI individuals’ needs for services, opportunities, and community inclusion.
While the disparities cannot be easily fixed, service providers and allies can take steps to help make mental health more inclusive and accessible to DCI individuals. This series of articles explores DCI language usage, common stereotypes, and self-fulfilling cycles of discrimination along with some easy inclusive practices you can implement right away in your everyday life, both at work and in your personal life.
Person-First vs Identity-First Language
Historically, individuals were frequently viewed as little more than their diagnosis or disability. Before the terms disabled and chronically ill were part of mainstream language, society often used derogatory terms to refer to and describe DCI individuals. As language has evolved, person-first and identity-first language preferences have developed.
The intent of person-first language is to shift the view of DCI from one’s entire existence to one of several features of the whole person. Using person-first language, you would talk about disability and chronic illness by saying things such as:
“Robyn uses a wheelchair.”
“Jon has a visual impairment.”
“Sam has diabetes.”
While it is undeniably important to treat DCI people as whole, complex individuals, some people feel person-first language separates them from their disability too much. Only acknowledging disability as a part of someone can trivialize the impact of the DCI on that person’s life.
On the flip side, the intent of identity-first language is to remove the stigma associated with DCIs and center the impact it has on people in all areas of their life. Using identity-first language, you would talk about disability and chronic illness by saying things such as
“Robyn is a wheelchair user.”
“Jon is visually impaired.”
“Sam is diabetic.”
While these slight word changes may seem like semantics, it inherently ties one’s disability with their personhood. People’s DCIs cannot be separated from their life experience and daily experiences in society.
While both person-first and identity-first language are generally acceptable ways to talk about DCI, some individuals have strong preferences in how they are spoken about, while others do not. For example, someone may only want you to use person-first, while others will only want you to use identity-first language. Personally, I use both interchangeably in writing, but prefer identity-first language for myself. I will never not need a wheelchair in order to live my life. The fact that I am disabled and use a wheelchair have shaped how I live in society and my world view.
DCI Euphemisms
Given the historical negative connotations surrounding the words disability and chronic illness, some people have also developed euphemisms to use to avoid the stigma associated with the previous terms. While well-meaning, disability euphemisms actually end up perpetuating the stigma they seek to end. Common examples of euphemisms include “challenged,” “exceptional needs and/or abilities,” “differently-abled,” “people of all abilities,” “dis/ability,” and “special needs.” Although these terms may seem less negative, several minimize the impact of DCIs on individuals and their experiences. By examining a few of these in detail we can see the complicated nature of these words.
Even though it is true that DCI people frequently face multiple challenges, using “challenged” or renditions of the word, implies disability can be overcome. While adequate accessibility and accommodations can greatly improve DCI people’s ability to participate and succeed, the person will never not be disabled or ill. Using challenged implies anything and everything can be overcome through sheer will and creativity. This idea inevitably results in feelings of personal failure for the DCI individual when they cannot overcome their DCI or do something specific that just is not possible. My inability to walk is not a challenge, it is a simple fact.
Similarly, “differently-abled” implies the things people cannot do are replaced with different abilities. Although every individual, regardless of DCI status, has strengths and weaknesses, there is nothing that one person can do that no one else can. Differently-abled suggests we have superpowers that non-DCI people do not. Just because I cannot walk does not mean I can fly.
Lastly, “special needs” suggests DCI individuals have needs that no one else does. While the way we do things or need help with things might be different than non-DCI people are used to, there is nothing we need that other people do not need. We need to communicate with people, we need to learn, we need to do personal care, we need rest, and we need to care for ourselves. “Special needs” realistically just means accommodations and/or modifications, so why do we avoid saying those words?
Most everyone knows that these, and other, euphemisms mean DCI and they ultimately end up further singling out this community. Disabled, disability, chronic illness, and chronically ill are not inappropriate words. If you feel uncomfortable using these words, but not the euphemisms, I encourage you to ask yourself why. Unless a DCI individual explicitly asks you to use euphemisms when talking about them or working with them, you should never use euphemisms.
DCI Diagnoses as Adjectives
Another common misstep is when people inappropriately use medical diagnoses as adjectives, or misuse clinical diagnoses to describe a nonclinical event. Examples include:
“I had a panic attack when my boss emailed me.”
“He must be blind to have not seen the multiple emails I sent.”
“That idea makes no sense, she’s crazy to suggest it.”
While some comparisons have worked their way into everyday language, they end up minimizing the real experiences people have who experience these medical events and diagnoses. Our language is so vast we can get our point across without minimizing people’s experiences. When you find yourself misusing medical events and diagnoses, consider what other illustrative language you could use instead.
Inanimate Object Descriptor
Lastly, we’re all probably familiar with the usage of the word “handicapped” in reference to describing inanimate objects, like parking, entrances, and bathrooms. However, this usage of the word makes very little sense when you understand the origins of the word. It is also an inaccurate description when applied to individuals.
Handicapped originally came about through a gambling game and horse racing to describe the equaling effects of weighing down the fastest horses to level the field. In this case, a horse’s handicap was a disadvantage to winning the race.
Calling parking spots, entrances, and bathrooms “handicapped” does not make sense because they are not a disadvantage. Similarly, disabled people do not have disabilities placed on them by other people in a race or game, they just are the way they are. As you can probably guess, the word handicapped in relation to inanimate objects and individuals needs to be removed from our language. It expresses nothing that other words cannot better express.
What Should We Say?
First and foremost, we should always use the language DCI people prefer and we have to respect their choice. For example, I prefer identity-first language and consider myself a wheelchair user. You might prefer saying “Erin uses a wheelchair,” but that decision is not up to you. If you don’t know what language people prefer, use person-first if needed in the moment, and then ask one-on-one what the person prefers. Most people will be glad you asked and be happy to share their preferred language.
You should also use the word “accessible” for inanimate objects instead of “handicapped.” Accessible parking, accessible entrance, and accessible bathroom gives people more information about the accessibility of a place than the word “handicapped” does.
The language we use to talk about DCI and accessibility greatly impacts our perceptions. When we use euphemisms and outdated language it subconsciously reinforces the societal stigma and shame wrongly surrounding DCI. When we start talking about DCI for what it is, disabilities and chronic illnesses, we can start having real conversations about societal inaccessibility and inequality because we will all have the same reference point for these conversations. I hope you’ll practice using the words disability/disabled and chronic illness/chronically ill in place of euphemisms and accessible in place of handicapped.
—By Erin Vallely
Erin Vallely serves as the Advocacy Specialist at Access to Independence of Cortland County, Inc. She works with nonprofits, for-profits, government organizations, and individuals to identify and rectify physical and policy-based barriers to disability diversity, equity and inclusion.
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