Gunnar A. Cerda, BCC, is the Manager of Pastoral Care for OhioHealth Grady Memorial Hospital in Delaware, Ohio.
On my way back home from the APC Annual Conference, I was reflecting on the plenary keynote regarding Patient Experience. Dr. James Merlino (Cleveland Clinic) invited us to frame patient experience not simply as customer service, but as an empathetic response to the situation and feelings the patient is experiencing. In other words, our role can be significant when we engage with patients, families, staff, etc. from a touch point of understanding their experience while they are within our care, instead of through a survey after discharge.
I was also reflecting on a recent PlainViews article written by Sue Wintz (May 21, 2014 Vol. 11. No. 9), about the language we use. Sue was referencing the militaristic language of “battling” an illness, and the “struggle” and suggested that there might be more helpful words that we could use.
Imagine framing an illness as a journey rather than a battle. Such re-framing could also invite chaplains to re-imagine pastoral encounters and for patients to imagine their experience through a different lens.
Holding the above two pieces simultaneously in my mind as I was traveling at about 38,000 feet on the way home from APC, I began to reflect on language, my own experience, the experience of my son and the experience of many persons with disabilities. I had felt inspired by Sue’s article and had been thinking about how I should approach writing about the importance of language around disability before leaving for California, but it was after APC Annual Conference when my thoughts seemed to come together.
Allow me to share with you a bit about my son. Benjamin is a great kid with a quirky sense of humor. He has achieved his first IT networking certification through the vocational center affiliated with his high school, and has built his own computer. In fact, in our house, Benjamin has become the de-facto resident IT and help desk person. Academically, he recently achieved the 90th percentile for Mathematics on the ACT College Board. Without a doubt, Benjamin is a smart, capable kid.
Benjamin also has Asperger Syndrome, part of the Autism Spectrum (or simply “Autism” under DSM-V). This means that Benjamin benefits from supports in the areas of receptive and expressive language, executive functions.
In other words, Benjamin has capacity and sometimes his agency is better served with supports. As a parent, my experience (shared with my spouse and daughter) with Benjamin has been a journey of affirmation, empowerment, advocacy and agency.
Overall, it has been a season of emotions, sometimes joyful, sometimes frustrating, yet I would not characterize it as a battle that needs to be won or overcome. Language can re-frame a perspective, not only of illness, but of disability as well. And the first step in re-imagining the words we use around persons with disabilities comes from remembering the person first. As an example, notice the way in which you were introduced to Benjamin. You first learned his name, followed by a bit about his personality and then about his gifts and graces.
Eventually you learned that he has a disability, but by then, you knew him as a person first. His identity, situation, potential, and future were not defined by disability. Rather, the power of the words used to describe him promoted independence over dependence, agency over surrogacy, and capacity instead of incapacity. As a hospital chaplain, I have frequently heard the language of disability used about and to describe patients. Indeed, while it is often necessary to describe a patient’s medical condition in the healthcare environment, it can be inappropriate to define a person by his/her situation.
Sometimes this language may sound soft, as in “the disabled person” (the dementia patient, the psych patient, the quad, the paraplegic, etc.) in room 17. Sometimes, it may sound a harsh, as someone refers to a person as “crippled, deformed, afflicted, retarded, stricken, or crazy.” Likewise, it is often inappropriate to claim that a person “suffers” with a disability.
Not all persons with disabilities describe themselves as suffering; many would describe their lives as happy and productive. Not to mention that suffering implies spiritual or emotional distress, which all persons will encounter throughout life and through many situations unrelated to ability.
As Sue quoted in her article, “A better understanding of people’s uses of metaphor can help to identify possible sources of misunderstanding, and to improve communication involving members of other groups.”
When empowering language is used about persons with disabilities, the metaphors can shift the focus from a person’s limitations, to a perspective of ability, and from patient or diagnosis to personhood.
Re-imagining the language we use in our professional practice can provide improved pathways of empathy, understanding, and communication. The words we use regarding disabilities can inform our patient’s (and their families) feelings, attitudes and experience of the care we provide while they journey with us.
How might persons with disabilities describe their experience of us, when asked if they were treated with courtesy and respect, and if they are willing to recommend the hospital to others, when the language they heard from us was not the cultural norm of descriptive and defining, but instead was person first and felt empowering and life giving?
Gunnar A. Cerda, BCC, is the Manager of Pastoral Care for OhioHealth Grady Memorial Hospital in Delaware, Ohio. Gunnar is ordained in the United Church of Christ (UCC) and has held several roles serving the church around Disabilities Advocacy. He lives in Delaware, Ohio with his wife and two teenage children.
Cerda, Gunnar A. “Patient Experience and the Language of Disability”. PlainViews. Vol. 11 No. 13. July 16, 2014. HealthCare Chaplaincy Network. Web. http://www.plainviews.org.