Label Me as a Person, Foremost and Always : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.

Label Me as a Person, Foremost and Always

by RNE submissions on 05/02/17

By Joanna Mechlinski

Those of us with a chronic illness or disabilities are essentially just like everyone else.

That should go without saying in 2017. But sadly, there are many people who still do need educating.

This is the reason that many have pushed for changes in language that describes chronic illness or disability. Many of the differences may appear subtle but are truly significant. When speaking about a person with mobility impairment, for example, many are accustomed to describing him or her as a “handicapped person.” Today, however, the emphasis is on the person first…a disability is what someone has, not is. Furthermore, it's simply one of the many things that make up his or her life. People living with a chronic illness or disability have hopes and dreams, pet peeves, a particular sense of humor, talents and things they aren't so good at. Guess what? That's basically the definition of every human being who's ever lived.

It’s suggested that a better way of speaking is “person who uses a wheelchair” You should also refrain from outdated terminology such as “wheelchair-bound,” as wheelchair users tend to view their chairs as a vehicle for independence, not confinement.

Don’t paint someone with a chronic illness or a disability as a victim. People use canes or have lupus; they aren’t “stricken” or “afflicted” by them.

On the other hand, don’t lavish praise on someone simply because he or she completed a normal everyday task. Individuals with chronic illness or disabilities aren’t “inspirational” or “heroic,” just doing their best to live ordinary lives like everyone else. To describe that as anything else often comes across as patronizing or condescending.

This is the time of year for high school proms; and with that, the inevitable media coverage about someone asking a student with a chronic illness or disability to be his or her date. No one would even dream of writing an article about a prom-goer raised by a single mother or attending the school because of a financial aid scholarship. So why is it suddenly newsworthy when someone has Down's syndrome or uses a wheelchair?

No doubt some of you reading this are rolling your eyes and mentally sighing by now. “What's the difference?” you're wondering. “It's only words.” Yes, that's true to an extent. But as you might also realize, “only” words carry a huge power. Depending on how they are used, words can influence society's entire perception of a person or thing. Right or wrong, once certain words become commonplace, they begin to have a life of their own.

Furthermore, language in general is constantly evolving. Our world, our needs and our mindsets are always changing, so the words that we use as tools to describe them do as well. As a journalist, I have always been fascinated by linguistics. I love to read about the origins of particular words, to research the literal meanings of well-worn idioms, and to hunt for new words that more precisely fit the ideas I'm trying to convey. Why should words that pertain to illness and disability be any different?

Bottom line, everyone is an individual with different thoughts and life experiences. Just because an organization says that a particular word or phrase is best doesn’t mean that every person agrees. For instance, the phrase “differently-abled” popped up in the 1980s. The idea was to focus upon the positive rather than the negative that the person is able to do most of the things that the average person in their society does, but perhaps goes about it a little differently. Personally, I have never used the phrase. To me, it's overly euphemistic. It also seems to imply that because of living with chronic illness, I might have been gifted some sort of extraordinary ability the typical person doesn't have, such as flight or x-ray vision.

If you have any doubts or questions, simply ask the person what he or she prefers. You might feel shy or awkward about bringing up the subject; but just remember that avoiding it doesn’t mean it doesn’t exist. It’s always best to get things out in the open and talk about them. Most individuals will be glad you are making an effort! Treating one another with respect is really what it's all about.

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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