ALOPECIAN
[Pronunciation: al-uh-pee-shee-an]
Noun (Informal): A person who has a form of the hair loss condition known as Alopecia or Alopecia Areata.
Plural: Alopecians
Examples:
- Alopecian women and girls often have a very different experience with the condition than men and boys, but the common assumption that alopecia is ‘easier’ for males is incorrect.
- Having been an alopecian for most of my life, I have a very different experience in crowded, public spaces than people who do not have such a visible difference.
- As an alopecian, I loathe being called an alopecia sufferer.
I’ve been using the term alopecian for a while now, although I’m certain I’m not the first to do so. I’m also often questioned, almost always from non-alopecians, about why I use this term.
My primary reason for using the term alopecian is simply that I don’t like the alternatives.
“Alopecia sufferer” is probably the worst, for reasons which I imagine are obvious. I don’t think of myself as suffering, a victim of some tragic affliction. The term “alopecia sufferer” implies that the condition is something that is wrong with people like me, which I fundamentally disagree with. It’s demining and implies that I should want myself to be ‘fixed’.
The most accepted alternate terminology is “people with alopecia” or sometimes “people living with alopecia”. These are fine for formal discussion and professional language, and are certainly preferable to the “sufferer” idiom, but still I find them lacking. For one thing, the length and formal address of the phrase feels to me out of place in casual conversation – “Why is that kid staring at you?” “Oh, because I’m a person living with alopecia.” It’s a clunky sentence.
My primary objection to ‘person with alopecia’ however comes from the philosophy behind person-first language.
If you’ve read any disability related literature or been involved in disability advocacy, you’ll know that person-first language is a hot button topic. The theory is that when discussing someone with a condition you should name the person first and the condition second. This is a reversal of the usual English syntax, where the adjective usually comes before the noun (eg. the brown fox, the lazy dog). So instead of saying Deaf person, or autistic woman, you would instead say person who is Deaf, and woman who has autism. The use of person first language was adopted by many advocacy groups in the late 1980’s, based on the hypothesis that how we speak about a subject influences feelings and behaviour toward said subject. Person first language is therefore supposed to the place the inherent humanity of people with disabilities in the forefront and prevent dehumanization and disrespect.
That’s the theory anyway.
Unfortunately, language is incredibly complicated.
While there are a great many people and many organisations who believe that person first language is the way to go, a growing number of people working in disability activism find the terminology and the rationale behind it to be inaccurate, or even kind of insulting. I’m in the latter camp.
There are three potential problems with person first language.
The first is the implication that non-disabled people apparently need to be reminded that disabled folk are still human. I can’t even think of a way to describe that other than ‘highly problematic’. If you need to invent a language paradigm to remind yourself that other people aren’t less than you, I would suggest you have some deeper problems which need examining.
The second problem is that the phrasing of “person with X condition” or “person living with X condition” implies that there is something wrong with X condition. It boils down to the same ‘person with a problem’ descriptor that ‘sufferer’ has. The implication is that the condition is bad, and inherently devalues anyone who has it.
The final issue is that for many people living with these conditions, the idea that they can separate their experience as a person from their experience with their condition is not accurate. For people whose condition/s effect the way they think, feel, interact with people or have access to the world, it’s impossible to separate daily life as a general human from daily life with their specific set of circumstances. Their condition is a fundamental part of their identity and the way that they experience the world.
So what’s the alternative?
Identity first language.
Identity first language uses (you guess it) the identity or condition before the subject, as in Deaf people or autistic woman. Many people find self-identifying in this way to be quite affirming – having a terminology that feels like an ‘us’ rather than a ‘them’.
In the case of certain identities or conditions, this can be difficult when there is no grammatically correct way to use this phrasing. Alopecia is one such identity where there is no correct or formal way to use identity first language. “Alopecia person” doesn’t really fit. Hence the use of the informal or colloquial term alopecian.
I know it’s not a term for everyone, and most definitely not a term for every occasion. You won’t be finding it academic journals any time soon. It’s also not something you should be calling someone else, especially if you aren’t an alopecian. The key is in self-determining, in defining for yourself and as a community how you want to talk about your lives.
The counter example I’ve seen tossed about a few times is that we don’t call people with cancer ‘cancerians’. Absolutely right, because that would be rude. It would be rude because the term that the community has chosen for themselves is Survivors. The point is they’ve chosen the terms they want to define themselves with, and that’s a pretty amazing thing.
Ultimately, there is never going to be one word to accurately describe so varied and diverse a group of people as those thrown together by this random quirk of genetics. In the meanwhile, I hope you all feel welcome to join and enjoy being a part of this alopecian family. Maybe it’s not what you had thought to expect, but it can be pretty darn outstanding.
Love, Alopecia.
Love, Alopecia 