Deafblind Awareness Week

This week is Deafblind Awareness week. But for me, and for the many people I meet every day, it is always Deafblind Awareness week/day/moment. I sometimes feel like my life is a lesson in awareness.

It has its good sides. I would hope to think that when people see me in public, doing regular things like shopping or having coffee that they will one day, just think of me as a regular person who happens to be unable to hear or see. Everyone has things that they cannot do, some are more obvious than others. I would hope, through mine, and others actions that we can show that people who are Deafblind can work, go to school, have families, and all of that.

But sometimes, sometimes I just want to be unremarkable. I wish people weren't so "aware." Of my braille, my dog, my ASL, my difference. I sometimes wish that I could spend time in public without some curious person asking me questions, invading my space, or making stupid inane remarks like "I think sign language is so beautiful! I love watching people sign."

I know they mean well. I know that when people think of Deafblindness, they think of Helen Keller and Annie Sullivan, and how does their life-- lived almost one hundred years ago-- fit into our world today? People want to know things. How do I cook, or schedule doctor's appointments, or cross roads. They want to watch me texting or reading braille, or chatting with friends in ASL, not because they are mean, but because it is new and different and "interesting." In this day and age, our society thinks that they have the right to learn and know anything about anybody. Look at all of those reality television shows, the blogs and the twenty-four-hour news coverage. We are a nosey society who believe that we have the right to ask-- to know-- and that privacy is not meant for those who have lives which are different from the norm.

I try, in my personal life, in my work, and in my community efforts, to educate, to advocate, and to continue to grow as a person. But sometimes being aware of deafblindness means being aware that your attention, your questions, your comments, aren't always welcome. If a person wants to know how a Deafblind individual crosses a road, they can look it up on Google. Which isn't nearly as interesting as asking me directly and watching my conversation partner interpret their words into my hands. But if it's truly information being sought, there are a wealth of resources out there. There are even Youtube videos of tactile ASL. Use these resources and educate yourself if you are so inclined.

I don't mean to come off as a grouchy curmudgeon. But if I could make people "aware" of just one thing, it is that I'm a regular person, just like someone who is sighted or hearing. That I'm out in the big world, trying to live my life as best as I can, and that I'm not some kind of carnival freak show exhibit to be stared at, or remarked upon. Be aware, use consideration, think!

A Question of Manners

I have a question for all of you in blog-land.

I have an iPhone. It is connected, via bluetooth, to my braille display. Apple has built a "screen curtain" into all their products. This feature blackens the screen so people can't read it. Usually I have this feature enabled, but sometimes not. I find that when I'm in public, either texting, or using my Mac, and the screen curtain is not enabled, people will stand near me, to watch, and read my screen. I find this rude, annoying and intrusive. This is why I usually have the screen curtain turned off on both my Mac and my iPhone when out in public. It doesn't keep the nosys from staring, but at least they can't read my screen.
I know people don't mean to be rude, and that most people don't think about it, that they are just so fascinated with my technology, bla bla bla. I really don't give a tinker's damn that their intentions are good; I want to be left alone.

So my question to you, is it normal for sighties to do this to one another. In other words, if you were to see a sighted person in a coffee shop who had a laptop or cell phone, would it be socially acceptable to stand there and visibly read their screen? Am I just too prickly and should just chill out? If sighted people do it to each other and it isn't considered "rude" I'm more than willing to look at this issue differently. Right now, however, it just feels like a huge invasion of my space, and like because people know I'm blind, they think it's perfectly ok to engage in behaviors which are not acceptable to do if I were sighted.