Words are powerful. Old and inaccurate descriptors, and the inappropriate use of these descriptors, perpetuate negative stereotypes and reinforce an incredibly powerful attitudinal barrier. And this invisible, but potent, attitudinal barrier is the greatest obstacle facing individuals who have disability diagnoses. When we describe people by their medical diagnoses, we devalue and disrespect them as individuals. Do you want to be known primarily by your psoriasis, gynecological history, the warts on your behind, or any other condition?
Worse, medical diagnoses are frequently used to define a person’s potential and value! In the process, we crush people’s hopes and dreams, and relegate them to the margins of society. If we know about (or see) a person’s diagnosis, we (mistakenly) think we know something important about him, and we give great weight to this information, using it to determine how/where a person will be educated, what type of job he will/won’t have, where/how he’ll live, and more. In effect, a person’s future may be determined by those with authority over him, based on the diagnosis. Today, millions of children and adults with disability diagnoses are effectively “incarcerated” behind the walls of “special (segregated) places:” special ed classrooms, congregate living quarters, day programs, sheltered work environments, and more—all because of the diagnosis that’s been assigned. When incorrectly used as a measure of a person’s abilities or potential, medical diagnoses can ruin people’s lives.
Because society tends to view disability as a “problem,” this seems to be the #1 word used about people with disability diagnoses. 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, to a child, to hear his parents repeat this over and over and over again, throughout his childhood? How would you feel if those who are supposed to love and support you constantly talked about what’s “wrong” with you? Let’s stop talking this way!
If people with disability diagnoses are to be included in all aspects of our communities—in the ordinary, wonderful, and typical activities most people take for granted—and if they’re to be respected and valued, we must use the ordinary, wonderful, typical language used about people who have not yet acquired a disability diagnosis. (If you live long enough, your time is coming!)
Children with disability diagnoses are children, first. The only labels they need are their names! Parents must not talk about their children in the clinical terms used by professionals. The parent of a child who wears glasses (diagnosis: myopia) doesn’t say, “My daughter is myopic,” so why does the parent of a child who has a diagnosis of autism say, “My daughter is autistic.”?
Adults with disability diagnoses are adults, first. The only labels they need are their names! They must not talk about themselves the way professionals talk about them. An adult with a medical diagnosis of cancer doesn’t say, “I’m cancerous,” so why does an adult with a diagnosis of cerebral palsy say, “I’m disabled.”?
The use of disability diagnoses 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 use diagnoses 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 disability diagnoses in front of them, as if they’re not there. We must stop this demeaning practice.
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 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 I think he is—I must use positive and accurate descriptors that portray him as a whole, real, wonderful person, instead of as a collection of “defects,” “problems,” or “body parts.”
A person’s self-image is strongly tied to the words used to describe him. For generations, people with disabilities have been described by negative, stereotypical words which have created harmful, mythical portrayals. We must stop believing (and perpetuating) the myths—the lies—of labels. We must believe children and adults who have been diagnosed with conditions we call disabilities are unique individuals with unlimited potential to achieve their dreams, just like all Americans.
People First Language isn’t about being “politically correct.” It is, instead, about good manners and respect (and it was begun by individuals who said, “We are not our disabilities!”). We have the power to create a new paradigm of disability. In doing so, we’ll change the lives of children and adults who have disability diagnoses—and we’ll also change ourselves and our world.
