People First Language

by Beth Campbell

Grab a pencil and paper- we're going to have a quick test. Following are two words, when you read them, jot down the first four things that pop into your head: Tourette's Syndrome. Did you think of curse words, outbursts, twitching or other symptoms of Tourette's or did you think of a teen working in the grocery store? Let's try another: Autism. Did that bring to mind Rainman, hands flapping, savant abilities in math or music or a little girl sitting in her room paying dolls with her big sister?

We have all heard of people who “suffer from” cerebral palsy or are “victims” of cancer. In hospitals, medical staff treats the heart attack in room 235 or the stroke in ICU. Everyone has acted like a retard, an idiot, or a moron at some point. There are handicapped spots in all parking lots and stalls in bathrooms. Teachers know that the learning disabled cannot do the same class work and autistics have behavior problems. Those people are part of everyday life.

The problem with the last paragraph is that, while we know what someone's diagnosis might or might not be, we know nothing about who the person is. People first language is more that just politically correct terminology. It is looking at the person rather than one of their attributes. It is as if we call the girl next door “the blue eyes” or the man who sits next to you in church “the bushy eyebrows”. There is one exception- these examples do not typically have negative connotations.

Kathie Snow, author of Disability is Natural, has a son who has a disability. I have known of Kathie for several years and have heard her family's story at least four times. I can tell you that he is active at school, has friends and a social life, enjoys acting, and with little effort can bring a smile to your face. I cannot, for the life of me, tell you what his disability is. Snow starts presentations with a question: why do we label people with disabilities? Audience members give various answers, but they all filter down to one- to get services. You can go through life without ever being told you have autism, but cannot get educational supports unless you have an education plan with a diagnosis, goals, and a list of your limitations.

I have worked with Families Helping Families of Greater New Orleans as an employee or volunteer for over a dozen years. Most of the staff either has a disability, or has a family member with one. Other than the self-advocate who has a traumatic brain injury (the same diagnosis my sister has), and the three with children with Autism (as do my Godsons have), I probably could not tell you what staff's family member's disabilities are- even the official diagnosis of employees and volunteers who themselves have a disability escapes me. There is one more exception- those who have come to me for help that specifically related to their or their child's diagnosis, for example a referral to a Spina Bifida support group. The reason for this? Simple- at FHF, we focused on their successes, “abilities”, and those unique characteristics that make them some of the most amazing people I know. I do not admire Debra because she has a disability and works- I am in awe of her ability to be completely selfless and tirelessly fight for the rights or ALL people with disabilities, for the time she takes to help others see what they can do and to not look at their disability as an obstacle, but rather as just another characteristic, nothing more than their eye color or height. She also does all of this without coming across as a nag or that she is lecturing them. Again, this is not because of her disability, but of WHO SHE IS. She would be as much of an inspiration to me if she didn't have a disability.

Why do I harp on this issue? Well, it has nothing to do with being politically correct. It is solely about humanity and respect. I am an Indian, not a Native American. My husband, who is “white,” was also born here in the U.S., which means he, too, is a native to America. People First Language is not about making others, or you, feel better- it is about treating them as people and not simply a disease, syndrome, or disorder. It is about removing known stigmatizing labels from a person's identifier and remembering that they, too, are people. I hope you pause to consider this the next time you are tempted to call someone a retard when he cuts you off in traffic or want to call the fast food cashier an idiot when they cannot get your order right.