As long as its not taken to an extreme, it can be useful to identify groups of disadvantaged individuals with meaningful labels, such as “orphans”, “the poor”, or “Yankees fans”.
That kind of thing can be overdone, however, minimizing the value and humanity of the objects of such labels.
So how should those of us with MS be named? A common sobriquet I hear is “MSer”. This term makes my skin crawl under the numbness and tingling it already feels. Part of the reason is that it reminds me of a former employer. I won’t say the name of the company, but its employees are often referred to as “IBMers”. Anything that dredges up memories of that wretched place is to be avoided at all costs.
There’s another reason I’m not crazy about the label. The suffix “er” usually (but not always, as I describe in a previous musing about the capriciousness of the English language) refers to “one who ‘whatever’s”, e.g. a runner runs, a healer heals, etc. So does that mean an MSer MS’s? I don’t do MS, I have it. Just because I have a house, it doesn’t make me a houser. (More often it makes one a debtor.) MS is a part of me, but it doesn’t identify me or my actions and attitudes.
What’s left? Less sensitive people might refer to “victims of MS”. There’s an element of truth to that term. We are no less victims of the condition than someone who is mugged is a victim of that crime. The problem is that the label is itself a victimization. There’s no value in considering oneself a victim of anything. It tends to breed a sense of self-pity and entitlement that does nothing to help overcome its cause.
Speaking of insensitive, a friend recently told me about someone who, in his presence, referred to people like himself who use assistive devices to get around as “cripples”. Shades of James Watt! Have we not grown beyond such hideous labels? I daresay any minority group has its own set of invectives they’d like to see thrown into the sea of forgetfulness. This is ours.
We don’t need to go so far as insisting on “neurologically-challenged”. My term of choice is people (or the more informal, folks) with MS. (Reminds me of “words with friends”, another chronic illness devastating the nation.)
The key is, people first. We are all people first. To forget that is to devalue one another. We all have our baggage. For some of us, it’s MS. For others it’s abuse, addiction, arrogance, or some other issue. Once we put the challenge ahead of the humanity, we’re exacerbating (a cool MS word) the problem.
(The way we see and address others has more power than we might think. I went into that idea in a post about, of all people, the Old Testament prophet Ezekiel. Read it here, if you wish.)