Stereotypes can shift how we view individuals with disabilities and chronic illnesses. It is important to familiarize yourself with common social assumptions and how to check problematic ideas you might not realize existed.

Myth 1

Myth number one is that individuals in the disability and chronic illness (DCI) community have a lower quality of life because they can’t do things like non-DCI people can. Many people associate quality of life with strict self-sufficiency and independence. In reality, some DCI people do have a lower quality of life because societal structures make it difficult or impossible to access the services, supports, and opportunities we need in order to live well. However, many DCI people also report the same or a higher quality of life than non-DCI people.

This is the second article in a series: Working With the Disability and Chronic Illness Community

The disconnect here typically stems from assuming everyone values the same things. For example, I’m guessing many would be devastated if they could no longer drive due to a disability or chronic illness. However, if you lived somewhere that had a great public transportation system, you would realize that the important thing was being able to get out, and go about your typical activities, and not actually the loss of your ability to drive. More often than not, it is the lack of community accessibility that impacts our ability to have a high quality of life rather than our personal disability or chronic illness.

Myth 2

Myth number two is that a lot of DCI individuals are lazy and could do a lot more if they tried. For many DCI individuals, our abilities and needs vary, and even change, daily. In fact, most DCI people want to do more and be more active, but physically cannot. Although motivation will vary as it naturally does, the vast majority of DCI individuals are always doing their best to be as active and engaged as they can.

For example, someone who works from home and joins meetings lying on the couch is probably doing their very best to stay engaged with the meeting. Their disability or chronic illness likely make it difficult or impossible for them to work if they were forced to be in the office and sitting up all day every day.

It can be confusing when you see people who have a DCI more or less active from day to day, but that’s just a consequence of having a disability or chronic illness. Symptoms and energy levels can fluctuate without warning. Unless you really know the person, you are not in a position to pass judgment about someone’s laziness. If you have concerns, it’s okay to respectfully ask people if they need more support or accommodations.

Myth 3

Myth number three is that some people are more or less disabled than others. For example, you might hear mild versus severe autism or cerebral palsy. In reality, DCI people are all unique and all have equally important needs. Some people might have higher or lower support needs, but no one is quantifiably more or less disabled than another person.

Regardless of the diagnosis or symptom, a disability or chronic illness impacts our whole life in countless ways. While some aspects will be visible, others will be less visible. Everyone’s experience with their DCI is unique which means we can’t, and shouldn’t, compare people’s different DCI statuses. One person’s experience with their DCI is not representative of others’ experience.

Myth 4

Myth number four is that DCI people need to be taken care of and drain society of resources. Contrary to this popular belief, DCI people are major economic drivers and contribute to society. This is especially true when we have access to the supports and opportunities to use our strengths in social settings. Realistically, it is the policies and structures that hinder DCI people’s contributions to society.

For example, working remotely when a job can be done remotely is a reasonable accommodation, and allows me to hold a full-time job. I earn income, pay taxes, and stimulate the economy when I spend my paycheck on goods and services. While it’s true DCI individuals substantially contribute to the economy, we also need to be careful not to devalue the lives of people who are unable to work at all. Economic use versus contribution should never be used as a judgment of the value of a life.

Myth 5

Myth number five is that being a DCI person is a tragedy and should not be celebrated. While non-DCI people struggle to imagine living with a DCI, that does not mean people with disabilities or chronic illnesses cannot have great lives. DCI people live fulfilling lives and frequently report doing things they otherwise would not. In reality, society simply fears its own assumptions about the lives of DCI people. It is only societal perceptions and structures that make disability a “tragedy” in cases where people don’t have access to what they deserve to live a fulfilling life.

For example, a lot of people believe being independent means being able to take care of yourself without any outside help, whether that’s financial, or physical, or in-kind assistance. As a culture, we tend to rate people’s worth and quality of life on how well they can take care of themselves without assistance. However, being independent just means making your own decisions and controlling your life. Someone who can get up, get dressed, and drive to a job they accepted is just as independent as someone who hires an aide to help them get up, get dressed, and drives them to a job they accepted.

Myth 6

Myth number six is that DCI people rarely go in public, achieve anything, or have goals. This often results in non-DCI individuals being shocked when people go out and do things. Many people view DCI people taking part in normal everyday activities as inspirational. In reality, DCI people are everywhere, participate in activities, and have goals just like everyone else. DCI people really aren’t that different from non-DCI people. Taking part in everyday activities should not be viewed as inspirational if you’re inspired by their actions solely because they are disabled.

This myth can be highlighted by a personal example I have heard countless times. When I tell new acquaintances that I went to college and have a fulltime job, I am frequently met with shocked expressions of true amazement. People say things like “Wow, you went to college, that’s absolutely incredible!” or “You have a job? Wow, how fantastic!”

This seems harmless enough, until I see my peers telling people the same thing and not receiving the same level of shocked response. People expect non-DCI people my age to have some type of higher education and a job, but don’t expect DCI individuals in the same age range to be capable of the same things. People that I have never met in my life walk up to me in stores and say it’s so inspiring to see me out and about. If you’ve fallen into this trap or know someone who has, consider why DCI people doing everyday activities seems inspirational.

What to Remember

All these myths boil down to three things I want you to remember. First, DCI people are just like non-DCI people but face additional policy and structural barriers to equality and inclusion in society. It’s true there will be things DCI people just can’t do depending on their situation, but most of the struggles we face are created by the systems society has created.

Second, you should never compare yourself, or DCI people, to other DCI people because no situation or experience is the same. People can have the same diagnosis and have wildly different symptoms and needs. What helps one person with a diagnosis might not help someone else with the same diagnosis. You also do not have the right to question someone’s life.

Lastly, individuals with disabilities and chronic illnesses might need additional supports or accommodations non-DCI people do not, but that does not mean we cannot be successful. The way things are achieved might look different. but you shouldn’t automatically lower your expectations of what people do and are capable of just because someone has a DCI. Everyone, regardless of DCI status, will have strengths, talents, weaknesses, and limitations.

—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.

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.