I was asked recently by someone to explain what I feel when I am stopped by a stranger who wants to know why I dress the way I do. This is a much deeper issue than it appears on the surface, and the answer may require many posts to adequately communicate.
Before I give a direct answer, I believe it is important to set up a background that can help explain the reasons behind these feelings.
On numerous occasions, I have had strangers, acquaintances, and alleged friends openly mock me, or even steal my hat off my head and pull my gloves off my hands while I was standing in dangerous sunlight. This has not happened to me as a middle school child fighting off stereotypical bullies, but as an adult with a job and responsibilities. Many of these times, people around me laughed even though they understood why I wore my gear, and no one stood up for me. This type of behavior should not be acceptable, but cruel treatment of people with EPP is all too common.
So, naturally, there is an element of fear whenever someone approaches me with the intention of questioning my garb. Going through my mind is the question, is this person going to jeer at me or even try to hurt me this time?
Additionally, the vast majority of non-abusive encounters I’ve had start off negatively due to a lack of understanding. Common introductory statements are as follows:
“What’s with the mask, are you going to rob a bank?”
“Hey, cowboy, where’s your horse and buggy?”
“What’s the matter with you, aren’t you hot?”
I understand that sometimes questions are phrased this way because a person feels awkward about my strange dress and is trying to break the ice in what they hope is a joking, comfortable manner. Honestly, how could they know why I dress so eccentrically? But it is also important to understand that, due to ignorance, such questions are frequently intentionally derisive… unless I get the chance to explain, then suddenly it’s not funny anymore.
So, in a split second, usually at the same time I’m remembering a similar encounter that resulted in physical harm to me, I have to decide how to respond to one of hundreds of questions similar in tone and approach.
Questions like these, regardless of the intent behind them, are intrinsically condescending and deflect from the real reason behind the inquiry. If I really intend to rob a bank, it is dangerous to ask me because I likely have a weapon that I’m willing to use. It’s very clear that I don’t use a horse and buggy because I am either driving or next to my very own 21st century car. And if I’m wearing my gear because I’m cold in 100°F (38°C) weather, then, yes, there is obviously something the matter with me, so the question is invalid.
I have experimented for years with all sorts of answers to questions like these; I’ve tried humorously playing along, ignoring the person, expressing anger out of exhaustion, the list goes on. There isn’t any one-answer-fits-all knee-jerk response except for calmly saying, “I have a medical condition that prevents me from being exposed to sunlight, and that is why I dress like this.”
When this answer is given in response to such a question, it predominately elicits two responses that I don’t want to handle with a stranger, especially on my way to the grocery store in 95°F (32°C) sunlight: embarrassment for tactlessness and thus compunctious pity for my condition.
So, when a stranger with questions stops me, now you have a solid background that explains my state of mind:
- I feel fear and apprehension for my physical safety, even when I tell myself it is irrational.
- I’ve braced myself to respond to what is commonly a tactless, condescending ice-breaker.
- I’m preparing to superficially assuage some random stranger’s embarrassment.
- I don’t want any pity born of compunction.
- There are other internal emotional struggles involved in dealing with a disability that I haven’t discussed in this post, but this encounter brings those emotions to the surface.
- I am incredibly hot and probably a little cranky, because of what I’m wearing.
Now for the question from a stranger:
“Excuse me, sir, why are you dressed like this?”
Wait, what?? You’re not going to take my hat…? You don’t have some “witty” remark…? Hey! You won’t feel embarrassed when I answer this time! You may offer your pity, but I can deal with that because it won’t be laced with artificial guilt! You’re actually treating me with respect, too, how convenient for my internal emotional struggles! Okay, okay, it’s still really hot, but I think I have some time to spare for you…
The most overwhelming feeling, among a plethora of other positive emotions, when someone genuinely asks about the way I dress: