People First Language

To ensure Inclusion, Freedom, and Respect

for all, we must use

PEOPLE   FIRST    LANGUAGE

A commentary by Kathie Snow

www.disabilityisnatural.com

Who are the so-called "handicapped" or "disabled"?

According to stereotypical perceptions, they are:

People who suffer from the tragedy of birth defects.

Paraplegic heroes who struggle to become normal again.

Victims who fight to overcome their challenges.

Categorically, they are called retarded, autistic, blind,

deaf, learning disabled, etc., etc., etc. --- ad naseum!

Who are they, really?

Moms and Dads. . . Sons and Daughters . . . Employees and Employers

Friends and Neighbors . . . Students and Teachers. . . Leaders and Followers

Scientists, Doctors, Actors, Presidents, and More

They are people.

They are people, first.

People with disabilities constitute our nation's largest minority group (one of five Americans has a disability). It is also the most inclusive and most diverse: both genders, any sexual orientation, and all ages, religions, ethnicities, and socioeconomic levels are represented. Yet people who have been diagnosed with disabilities are all different from one another. The only thing they have in common is being on the receiving end of societal misunderstanding, prejudice, and discrimination. Furthermore, this largest minority group is the only one which any person can join at any time! You can join at birth or later, through an accident, illness, or the aging process. If and when it happens to you, will you have more in common with others who have disability diagnoses or with family, friends, and co-workers? How will you want to be described? And how will you want to be treated?

The Power of Language and Labels

Words are powerful. Old, inaccurate descriptors, along with the inappropriate use of medical diagnoses, perpetuate negative stereotypes and reinforce an incredibly powerful attitudinal barrier. And this invisible, but potent, attitudinal barrier---not the diagnosis itself---is the greatest obstacle facing individuals with disabilities. When we make the diagnosis the most important thing about a person, we devalue and disrespect him/her as an individual. Do you want to be known primarily by your psoriasis, gynecological history, the warts on your behind, or any other condition?

Sadly, disability diagnoses may be used to define a person's value and potential, and low expectations and a dismal future are often the predicted norm. Once we know a person’s diagnosis, we (mistakenly) think we know something important about him, and this information is then used to decide how/where the person will be educated, what type of job he will/won’t have, where/how he’ll live, and more, including what “services”he needs. And those “special”services frequently result in the social isolation and physical segregation of millions of children and adults in special ed classrooms, congregate living quarters, day programs, sheltered work environments, special (segregated) recreational activities, and more. (Are other people isolated, segregated, and devalued because of their diagnoses?) With the diagnosis in hand, we work on people’s bodies and brains, while paying scant attention to their hearts and minds. Far too often, the misuse of a diagnosis can lead to harm, instead of help—and can ruin people’s lives.

Inaccurate Descriptors

"Handicapped" is an archaic term (it's no longer used in any federal legislation) that evokes negative images of pity, fear, and more. The origin of the word is from an Old English bartering game, in which the loser was left with his "hand in his cap" and was thought to be at a disadvantage. A legendary origin of the "H-word" refers to a person with a disability begging with his "cap in his hand." This antiquated, derogatory term perpetuates the stereotypical perception that people with disabilities make up one homogenous group of pitiful, needy people! Other people who share a certain characteristic are not all alike; similarly, individuals who happen to have disabilities are not alike. In fact, people with disabilities are more like people without disabilities than different!

"Handicapped" is often used to describe modified parking spaces, hotel rooms, restrooms, etc. But these usually provide access for people with physical or mobility needs---and they may provide no benefit for people with visual, hearing, or other conditions. This is one example of the inaccuracy and misuse of the H-word as a generic descriptor. (The accurate term for modified parking spaces, hotel rooms, etc. is "accessible.")

"Disabled" is also not appropriate. Traffic reporters frequently say, "disabled vehicle." They once said, "stalled car." Sports reporters say, "the disabled list." They once said, "injured reserve." Other uses of this word today mean "broken/non-functioning." People with disabilities are not broken!

If a new toaster doesn't work, we say it's "defective" or "damaged" and return it. Shall we return babies with "birth defects" or adults with "brain damage"? The accurate and respectful descriptors are "congenital disability" or "brain injury."

Many parents say, "I have a child with special needs." This term generates pity, as demonstrated by the usual response: "Oh, I'm so sorry," accompanied by a sad look or a sympathetic pat on the arm. (Gag!) A person's needs aren't "special" to him---they're ordinary! I've never met an adult with a disability who wanted to be called "special." Let's learn from those with real experience, and stop inflicting this pity-laden descriptor on others.

"Suffers from," "afflicted with, "victim of," and similar descriptors are inaccurate, inappropriate, and archaic. A person simply "has" a condition, period!

What is a Disability?

Is there a universally-accepted definition of disability? No! First and foremost, a disability descriptor is a medical diagnosis, which becomes a sociopolitical passport to services or legal status. Beyond that, the definition is up for grabs, depending on which service system is accessed. The “disability criteria”for early intervention is different from early childhood, which is different from vocational-rehabilitation, which is different from special education, which is different from worker’s compensation, and so on. Thus, “disability”is a social construct, created to identify those who may be entitled to services or legal protections because of certain characteristics related to a medical diagnosis.

Disability is Not the “Problem”

Because society tends to view disability as a "problem," this seems to be the #1 word used about people with disabilities. People without disabilities, however, don't spend a lot of time talking about their problems. They know this would promote an inaccurate perception of themselves, and it would also be counterproductive to creating a positive image. A person who wears glasses, for example, doesn't say, "I have a problem seeing." She says, I wear [or need] glasses."

What is routinely called a "problem" actually reflects a need. Thus, Susan doesn't "have a problem walking," she "needs/uses a wheelchair." Ryan doesn't "have behavior problems," he "needs behavior supports." Do you want to be known by your "problems" or by the multitude of positive characteristics which make you the unique individual you are? When will people without disabilities begin speaking about people with disabilities in the respectful way they speak about themselves?

Then there's the "something wrong" descriptor, as in "We knew there was something wrong when..." What must it feel like when a child hears his parents repeat this over and over and over again? How would you feel if those who are supposed to love and support you constantly talked about what' "wrong" with you? Let's stop using this word about people!

The Real Problems are Attitudinal and Environmental Barriers

A change in attitude can change everything. If educators believed children with disabilities are boys and girls with the potential to learn, who need the same quality of education as their brothers and sisters, and who have a future in the adult world of work, we wouldn't have millions of children being segregated and undereducated in special ed classrooms.

If employers believed adults with disabilities have (or could learn) valuable job skills, we wouldn't have an estimated (and shameful) 75 percent unemployment rate of people with disabilities. If merchants saw people with disabilities as customers with money to spend, we wouldn't have so many inaccessible stores, theaters, restrooms, and more. If the service system identified people with disabilities as "customers," instead of "clients/consumers/recipients," perhaps it would begin to meet a person's real needs (like inclusion, friendships, etc.) instead of trying to remediate his "problems."

And if individuals with disabilities and family members saw themselves as first-class citizens who can and should be fully included in all areas of society, we might focus on what’s really important: living a Real Life in the Real World, enjoying ordinary opportunities and experiences and dreaming big dreams (like people without disabilities), instead of living a Special Life in Disability World, where low expectations, isolation, segregation, poverty, and hopelessness are the norm.

A New Paradigm

“Disability is a natural part of the human experience...”

U.S. Developmental Disabilities/Bill of Rights Act

Like gender, ethnicity, and other traits, a disability is simply one of many natural characteristics of being human. Are you defined by your gender, ethnicity, religion, age, sexual orientation, or other trait? No! So how can we define others by a characteristic which is called a “disability”?

Yes, disability is natural, and it can be redefined as “a body part that works differently.”A person with spina bifida has legs that work differently, a person with Down syndrome learns differently, and so forth. Yet the body parts of people without disabilities are also different. It’s the way these differences affect a person (or how a person is perceived) which creates the eligibility for services, entitlements, or legal protections.

In addition, a disability is often a consequence of the environment. Why are many children not diagnosed until they enter public school? Is it because physicians are ignorant or parents are “in denial”? Or is it because as toddlers, they were in environments which supported the way they learned? Then in public school, if a child’s learning style doesn’t mesh with an educator’s teaching style, he’s said to have a “disability.”Why do we blame the child, label him, and segregate him in a special ed classroom? Why don’t we modify the regular curriculum (per special ed law) to meet his learning needs?

When a person is in a welcoming, accessible environment, with the appropriate supports, accommodations, and tools, does he still have a disability? No! Disability is not a constant state. The diagnosis may be constant, but whether the condition represents a “disability”is more a consequence of the environment than what a person’s body or mind can/cannot do. We don’t need to change people with disabilities through therapies or interventions. We need to change the environment, by providing assistive technology devices, supports, and accommodations to ensure a person’s success!

Using People First Language is Crucial!

People First Language puts the person before the disability,

and it describes what a person has, not who a person is.

Are you “myopic” or do you wear glasses?

Are you “cancerous” or do you have cancer?

Is a person “handicapped/disabled” or does she have a disability?

If people with disabilities are to be included in all aspects of society, and if they're to be respected and valued as our fellow citizens, we must stop using language that sets them apart and devalues them.

Boys and girls with disabilities are children, first. The only labels they need are their names! Parents must not talk about their children using the medical terms used by professionals. Educators must not use terms like "sped kids," "LD students," "inclusion students," or other stigmatizing descriptors. Children in school are students and some receive special ed services.

Men and women with disabilities are adults, first. The only labels they need are their names! They must not talk about themselves using professional lingo. Service providers must not use terms like "MR client," "quads," and other diagnostic terms.

The use of disability descriptors is appropriate only in the service system (at those ubiquitous "I" team meetings) and in medical or legal settings. Medical labels have no place---and they should be irrelevant---within families, among friends, and in the community.

We often uses a diagnosis to convey information, as when a parent says, "My child has Down syndrome," hoping others will realize her child needs certain accommodations or supports. But the outcome of sharing the diagnosis can be less than desirable! A diagnosis can scare people, generate pity, and/or set up exclusion ("We can't handle people like that..."). In these circumstances, and when it's appropriate, we can simply describe the person's needs in a respectful, dignified manner, and omit the diagnosis.

Besides, the diagnosis is nobody's business! Have individuals with disabilities given us permission to share their personal information with others? If not, how dare we violate their trust! Do you routinely tell every Tom, Dick, and Harry about the boil on your spouse's behind? (I hope not!) And too many of us talk about people with disabilities in front of them, as if they're not there. We must stop this demeaning practice!

My son, Benjamin, is 20 years old. His interests, strengths, and dreams are more important than his diagnosis! He loves politics, burned fish sticks, classic rock, and movies—and he’s great at mimicking actors and politicians! He’s earned two karate belts, performed in children’s theater productions, and recently won a national award for his Thumbs Down to Pity film. Benj is attending college and wants to be a film critic. He has blonde hair, blue eyes, cerebral palsy, and a service dog, Riley. His diagnosis is just one of many characteristics of his whole persona. He is not his disability, and his potential cannot be predicted by his diagnosis.

When I meet new people, I don’t disclose that I’ll never be a prima ballerina. I focus on my strengths, not on what I cannot do. Don’t you do the same? So when speaking about my son, I don’t say, “Benj can’t write with a pencil.”I say, “Benj writes on a computer.”I don’t say, “He can’t walk.”I say, “He uses a power chair.”It’s a simple, but vitally important, matter of perspective. If I want others to know what a great young man he is—more importantly, if I want him to know what a great young man he is—I must use positive and accurate descriptors that portray him as a valuable, respected, and wonderful person, instead of as a collection of “deficits,”“problems,”or “challenges.”

A person’s self-image is strongly tied to the words used to describe her. For generations, people with disabilities have been described by negative, stereotypical words which have created harmful, mythical perceptions. We must stop believing (and perpetuating) the myths---the lies--of labels. We must believe children and adults who have been diagnosed with conditions called “disabilities”are unique individuals with unlimited potential, like everyone else!

The Civil Rights and Women’s Movements prompted changes in language and attitudes. The Disability Rights Movement is following in those important footsteps. People First Language was created by individuals who said, “We are not our disabilities.”It’s not about “political correctness,”but good manners and respect. Some reject People First Language, saying it’s unimportant; others say they prefer descriptors like “special needs.”But the feelings and preferences of people without disabilities are irrelevant. What is relevant? The feelings of the people we’re talking about and the perceptions of them which we create with our words!

We can create a new paradigm of disability. In the process, we’ll change ourselves and our world—as well as the lives of millions of children and adults.

Isn’t it time to make this change?

If not now, when? If not you, who?

People First Language is right.
Just do it—NOW!