The language of disability demonstrates that people with disabilities are frequently perceived and labeled exclusively in terms of their medical disabilities.
Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.
For example, my 93 year old aunt lives in a facility that provides several levels of care. She is currently in the independent living unit, but she is at the point where she needs more care than provided in independent living. She needs help to set up and administer her medication, assistance in going to the bathroom, help in dressing and getting her up and ready for the day. She is beginning to have memory problems. She has observed that many of the residents in the assisted living unit (the next higher level of care) have dementia. “Those people don’t think straight,” she claims, and she objects to being identified with those who cognitive problems and dementia. Many individuals with physical or mental impairments seek to dissociate themselves from disability. To be perceived as disabled is to be seen as helpless and incompetent. She and is afraid that she and her interesting life will be discounted. And my aunt certainly doesn’t perceive herself as not thinking straight.
My 55 year old brother-in-law works as a janitor, has a busy social life filled with attending dances, bowling, going to the movies, out to eat, enjoying social activities with his family and traveling. He is also developmentally disabled and lives in a group home. He doesn’t like the labels of “mentally retarded” or “developmentally disabled.” He likes people being identified as “staff or “residents” in his group home. He prefers to be around “normal” people rather than those who are disabled.
When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued.
When others without Parkinson’s generalize from their limited experience with Parkinson’s (my favorite: “My grandpa had Parkinson’s, and I know what it’s like.”), it is often more handicapping than the diagnosis itself.
So how do we change our language so that we can be helpful, not hurtful?
In terms of helpful language, we need to put the person first, not the disability. Our language should describe what a person IS, not what a person HAS. For example, “Kate is a dancer and writer of an award-winning blog. She also has Parkinson’s Disease.”
Our language is an indication of how we perceive others and their worth in the world. When describing the disabled person, we should use the same kind of language as we would when describing someone without a disability.
The following are two of my personal pet-peeves that illustrate hurtful language:
1. Calling an individual a "patient" unless you are currently his physician and providing treatment. I prefer "person with Parkinson's or PWP.
2. The word “caregiver” describes a relationship where one person is giving and providing care and the other person is taking and the recipient of the care. It does not describe the more give-and-take relationship that couples typically have where at times one person gives and the other person takes and at other times, vice versa. I prefer the term “care partner” which describes a more equal relationship.
Other hurtful language includes the following: being described as a “case,” sick with, afflicted by, suffering from, deformed, defective, infirm, victim, handicapped, abnormal, invalid, maimed, Parkinsonian, Parkie.
Being aware of the power of our language can go a long way in bridging the communication gap between those who are disabled and those who aren't. We will discover that in the end, we all value the same thing: being understood as a person.
What’s in a Name: Our Only Label Should Be Our Name: Avoiding the Stereotypes