People First Language and Christmas In Purgatory

My own editorial on the subject.  I apologize in advance for the academic writing style…I can get on a soap box a little when it’s something I’m passionate about.

For those of us who work with and/or have loved ones diagnosed with a disability, using people first language is well ingrained in our collective conscience. But people first language is not so widely known as to be universal. Yet.

People first language (also known as person first, or inclusive language) is the practice (and yes, it may take some practice) of identifying the person first, rather than their diagnosis. For example, Johnny is autistic defines Johnny as his disability, whereas the phrase Johnny has Autism, identifies Johnny as an individual, and autism as only one part of his whole. It also sends a message of greater potential because it doesn’t lock Johnny into one overriding quality or characteristic.

There are a lot of folks out there who don’t intend to use language that is considered offensive or inappropriate. And providing informative and accurate information about people first language will help to expand the use of appropriate words and phrases when speaking to, with, or about individuals with disabilities.

A Brief Historical Perspective

In 1966 Burton Blatt and Fred Kaplan published a book called Christmas in Purgatory. It was a disturbing expose of what were then called sanatoriums-hospitals for individuals with “mental retardation.” Without disclosing their purpose, the authors had made appointments with the directors of several of these institutions in the Eastern part of the United States and were allowed access to all areas of the facilities. Fred Kaplan had created a secret camera, which was attached to his belt, and he surreptitiously took pictures of everything he could.

The inside look at these institutions shocked the nation and Christmas in Purgatory became the impetus of a movement to redesign the state of facilities, and hold accountable those that were/are responsible for providing the care to these overlooked and condemned people-members of our human race.

While it is uncomfortable and disconcerting to view these pictures and hear the stories, it is also important to keep this history in our consciousness; to remind ourselves from where we’ve come, and to help us to maintain the dignity of care that has, thankfully, begun to become standard, today.*

A Comparison

In the mid-1960s, when Burton and Blatt were investigating state hospitals, individuals with disabilities were excluded and segregated. In the worst of facilities, the patients were offered no choices of care or participation. Learned helplessness was common, coupled with a lack of motivation, and living conditions were poor, to say the least. Quality of life was virtually nonexistent. Patients were kept in straight jackets and tied to beds or chairs. They were left alone for long periods of time with no stimulation, education, or options of activities in which to participate. It was not unusual to see patients walk around in various states of undress, wandering in rooms with unregulated temperatures; the floors splattered with urine and feces.

Today, individuals are living in the least restrictive environment possible. They are being offered active treatments and therapies. Education and acknowledgement of hopes, dreams, and desires are a priority. Society is looking at the definition of a meaningful and purposeful life for all individuals, regardless of age, race, or disability. It has been a long road; one whose end has not yet been reached, but who’s scenery has begun blossoming along the way and is extending into a bright future.

Language

The improvements and successes that have been achieved so far were absurdly necessary. And inclusive language is now undergoing the same transformation.

Language is powerful and we are sometimes not aware that some of the language we use is discriminatory or hurtful to others. This includes language that is infantilizing–speaking to a teenager or adult who happens to have a disability as if he/she were a baby or toddler. Language should be appropriate to the age of the individual, not their apparent diagnosis.

It is vitally important not to identify another human being as a diagnosis. When we think of someone as their diagnosis we make judgments and assumptions based on stereotypes, and then we treat them as that stereotype. The danger in this is that the individual will not get a chance to meet their full potential because they will be boxed in by the people who make decisions based on one word.

How Do We Effect Change?

It starts with awareness. First our own, and once we’ve become aware we are charged with encouraging others to develop the same awareness. Awareness leads to a change in attitude. Attitude is visible. With this change in attitude we become motivated to make a difference. A difference that may mean the world to someone else.

 

*It is important to note that Blatt and Kaplan did not blame the state of these institutions entirely on the fact that the individuals housed within were “mentally retarded” (the term of the day), but placed a level of responsibility on a lack of funding. At the time, institutions spent on average, $7 per day, to care for one resident.  They also stressed that while there were myriad of unspeakably horrible scenes, there were also witness to some lovely and compassionate staff who did what they could in an impossible situation.

Christmas In Purgatory, by Burton Blatt and Fred Kaplan. Published in 1966.

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