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What’s In A Name?: Attitudes About Calling a Disability a “Disease” Versus a “Disorder” or “Condition”

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“It is not what you are called, it is what you answer to.”

Using the correct language and terminology to describe one’s disability is a top concern for those in the disability community, and I witnessed that over the weekend during a semi-heated discussion in a Facebook group for those with OI (Osteogenesis Imperfecta).

I saw a group member post a status about her dislike of calling OI a “disease” versus a “disorder” or “condition;” she felt that the former had a negative perception, and that folks who heard it when one’s describing OI would gain an inaccurate understanding of what OI truly was.  That statement opened up a whole can of worms; there were a few folks who had their undies in a bunch from having their opinions refuted, while others stated their views in a more civil manner.

Making the Distinction Between “Disease,” “Disorder,” & “Condition” When Describing a Disability

The three medical labels – disease, disorder, and condition – can be (and typically is) used interchangeably by both medical professionals and individuals.  Here are the definitions of each:

Disease:

A disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

Disorder:

A disruption of normal physical or mental functions; a disease or abnormal condition.

Condition:  

An illness or other medical problem.

(Definitions obtained from Google.)

When I reviewed the definitions of each word, I saw that the terms were considered synonyms to each other, and appeared in two of the three definitions.  That led me to believe that one could use any of the three words to accurately describe their disability – they all mean that something is amiss with the body’s functions and/or structures that may impact one’s well-being or quality of life.

What Is the Accurate Medical Description of OI?

Since we can see that any of the three terms can be used to describe a medical situation or disability, how does this applies to those like myself with OI?  Which wording would be most appropriate?

To decide this, I reviewed at the way Medline Plus, the OI Foundation, and Google defined OI.

Medline Plus:

Osteogenesis Imperfecta (OI) is a congenital disease, meaning it is present at birth.  It is frequently caused by a defect in the gene that produces type 1 collagen, an important building block of bone.  There are many different defects that can affect this gene.  The severity of OI depends on the specific gene defect.

(Definition can be found here.)

OI Foundation:

Osteogenesis Imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause.  A classification system of different types of OI is commonly used to help describe how severely a person with OI is affected.  For example, a person may have just a few or as many as several hundred fractures in a lifetime.

(Definition can be found here.)

Google:

An inherited disorder characterized by extreme fragility of the bones.

Two out of the three definitions stated that OI is a disorder, and one called it a disease.  Though none of the aforementioned definitions stated that OI is a “condition,” it is not to say that it would not be appropriate to use when discussing OI.

It appears that the terminology used within each description did not change what OI is.  It would be my educated guess to assume that these same terms could be used to describe other medical illnesses in similar ways without altering the understanding or severity of the disability.

So What Exactly Is the Big Fuss about Terminology?

As I highlighted before, people with disabilities are very adamant about the correct labeling of their illnesses.  Such ardent feelings should be respected and understood when shared during conversations.

Some believe that the term “disease” scares folks because it can be associated with an illness that is contagious; others are wary of unintentionally casting a negative tone about OI if they use “disease” instead of “disorder” or “condition.”  All of these are valid concerns, especially since OI is a rare illness, and not widely known like other disabilities.

With any diverse group of people, both as members of the disabled community and within the subgroup OI, everyone has their own preference and comfortability regarding their disabled status, and what being disabled means to her and him.  We cannot expect others to agree with our specific way(s) of addressing OI (or any other illness), nor should we belittle those who have a difference of opinion.  As I say time and time again, we are all on this disabled journey at different paces and stages; there is no right or wrong way to be as we navigate this path towards acceptance and self-love for who and what we are.

My Personal Take Regarding What I Call My Disability

The following are excerpts from posts where I shared my own preference in what I call OI, and my thoughts about the attitudes expressed:

I use the term disease because it makes people take notice… that’s how I get attention when I discuss my OI.

Never been particular about what my disability is called – only care about being treated fairly & justly, & being able to be a badass diva on wheels.  That’s all I care about; medical terms don’t define my OI; I DEFINE IT.

Awareness is key in getting OI on the “map” of disabilities folks should know about.  When we “downplay” the harsh realities of those with OI experience by calling it “softer” terms, then we’re hurting ALL OF US.  I have Type IV; my OI doesn’t hinder my life like some, but I don’t want it dismissed because it doesn’t seem “serious” as other disabilities out there – it deserves as much attention as CP [Cerebral Palsy] or Spina Bifida.

I’m very adamant about being labeled correctly as a disabled person when it comes to my experience, as all of us are who have expressed our thoughts on this post.  Again, it’s what you choose to answer to that’s important, so make sure that folks call you by what’s important & respectful to you & your experience.

The last statement is what I want to emphasize – what I, or others, choose to answer to is the imperative part, not the wording or language used.  Words do have power, but we also possess the power to accept or dismiss labels, perceptions, or words that we feel either empower or disempower us.  I know that I am quick to correct someone who mislabel my OI or who I am as a disabled person because how I view myself takes precedence over what you may perceive me as.  No one can “shame” or “trivialize” my life experience or disability because I am confident in who and what I am; words that are meant to make me self-conscious do not shake me.  I know that not everyone is at that point with their disability status, and that is perfectly fine, but everyone’s comfort levels need to be respected and valued.  In my opinion, there are more important issues that we can focus our time, energy, rage, and advocacy efforts towards rather than “debates” on what labels we choose to call OI.

Final Thoughts

At the end of the day, no matter what terms you use, disability is disability, and flowery or provocative language will never change that.  Everyone has the right to call their disability whatever they desire because our views are diverse, no matter what shared disability connection may exist.  Conversations such as these can go either way – create a broader understanding or ostracize others with differing viewpoints.  The end goal should be the former; we should seek to remain open to various notions that challenge our own, and widens our understanding of the world around us.  I am happy that I engaged in this conversation because it afforded me the opportunity to befriend like-minded individuals, as well as read the reasonings behind disputes regarding my specific word preference.  When I, and others, enter into such discussions with an open-mind, objective stance, we gain invaluable insight that we never would have imagined.

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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