When I am not Becoming Invisible, I exist under a microscope. each motion of my cane, gesture of a hand, or choice in wardrobe is noted by somebody somewhere. While I may be disappeared because people do not understand, I am studied by those trying to understand.
My Disability Partner In Crime directed me to this poem that articulates what it is like to be under constant observation
Following Eyes, even friendly ones, watch what I do and how I do it. It satisfies a curiosity about the way I accomplish daily tasks making me an involuntary educational opportunity. Since I cannot observe people doing it, the act becomes something slightly voyeuristic.
To find out if I need help, Following Eyes monitor me. It’s a constant vigilance born of good intent, but still means I am studied. Implicit in that is an inherent doubt about my ability to do something and ask for help when needed. Ironically, I ask for aid less when I’m being scrutinized for “mistakes.”
Have you ever noticed that when a disabled person says something makes them uncomfortable, they are often told why someone’s intentions should nullify their feelings? I get this from the best of friends who understand disability in all ways possible for a TAB. I hate being continually studied , but because the intent is to learn or help, I am suppose to miraculously be fine with it. Guess what? I’m not fine with it.
I use the phrase “flying under the radar” to describe a state of being where /Following Eyes do not track me everywhere. Unlike becoming invisible, I am simply a person going about her life as much a member of the ubiquitous “public” as the next person. I crave being able to simply be myself perceived on my own terms.
Part of the problem is that I am often the first blind person an individual has ever seen. Curiosity is natural as is a desire to help. Neither gives the Following Eyes any less weight or invalidates the invasion of my personal space. What gives us this sense of privacy is a collective tendency people have of not watching every move another human makes.) With Following Eyes, I achieve personal space only if I ignore what I know is happening.
Can you guess who doesn’t have Following Eyes? Close friends who have stopped being constantly conscious of my blindness. Assuming I can do something, knowing I’ll ask if I need help, and not being fixated on how I accomplish a task, they look at something more interesting. It becomes a vicious circle where the solution encourages the problem for the familiarity that turns me into something unremarkable is only achieved by exposure to me with observation if not an essential component at least a highly likely side effect.
I cannot impress upon you enough how uncomfortable it is to be watched. Constantly. It’s probably akin to someone you don’t know undressing you with their eyes ALL THE TIME. Imagine what that’s like and get back to me about intent – they’re not touching you or even suggesting they do — nullifying discomfort.
One of the problems I tend to not have is staring. I don’t know if its just me, or my autism, or a combination of both… but I dislike looking at people. I generally gloss over someone’s face as I look around the room, and even if there is no one around my eyes rarely rest on any one thing. I also understand the staring, somewhat… though I can’t imagine what it must be like for you, some of my strange behaviors do get me odd looks and stares. (Like when I’m rocking.) However, while I can empathize with you, it really is just the way people are. People are ignorant. What can you do?
FK:
I guess I can blog about it and maybe that will get someone somewhere thinking resulting in them scrutinizing people less. It isn’t so much that staring bothers me, especially since I can’t see it happening. It’s more that feeling of being watched with incredible intensity.
Ultimately, I want to live in a world where I’m no more or less noticed than any other random person.
Autistic people, from what I’ve heard, don’t like to make eye contact so you “glossing over” faces makes total sense. Since many pwa fixate on a specific item, not letting your eyes rest on something seems like a possible coping strategy?
Very true! Blogging and people being more self-aware and conscious about their actions and behaviors is certainly good. I just think its sad that even so, there are just people out there who don’t care.
Its true, eye contact is not one of our strong points. They always tell you that, “Eye contact is important! It shows you’re listening!” I actually have to focus and concentrate to look at someone when they talk to me, and its hard, because the fact that I’m concentrating on it makes me worry that I’m overdoing it. How much is too much? When should I look away and for how long? These are the things I personally struggle with.
Also, what is “pwa”?
Either way, I think that if people are at least curious, its better than being dismissive or judgmental. The fact that people want to know and want to learn is a good sign, even if they are going about it the wrong way. At least they’re open to whats different to them. Maybe thats worth something?
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FK:
“Pwa” was my abbreviation for people with Autism. Was being lazy.
Yes, the trying is worth something. It’s better than being invisible. It’s just not as good as what everyone else gets by default. I guess that makes me mad.