deaf-blindness being an information disability. Naturally, since
we often do not know what is going on around us, we tend to
feel left out. It is especially hard when we are with a group of
friends or relatives. They are supposed to love us
unconditionally, right? Yet, in reality, they often completely
Scott: I've noticed that after years of being left out and
unpleasant experiences trying to be a part of things, I got to
where I stopped trying. And that attitude degenerated to where I
didn't want other people to try to include me, either.
These days when I go to some kind of family gathering, out of
obligation, I try to be polite with greetings. But then I make
no further effort to interact with anyone. I just find as remote
a place as is available and wait for the gathering to be over.
If there's booze, I'll take it. If not, I just retreat into my
I've noticed I sometimes frown at anyone that disturbs me after
the initial "Hi, hi, hi," phase. My in-laws complain I don't
smile enough at parties. What the hell am I supposed to smile
My own relatives still shout at me and complain I don't respond.
One cousin recently said I "sit like a lump." What the hell am I
supposed to do? Am I supposed to sit there grinning like a
Hey, if somebody wanted to try tactile or even a white board, I
would meet them halfway on the effort. But that doesn't happen in
the real world - not mine, anyway.
Angie: Oh yes, I get what you are saying completely. It's the
same for me. Every time I'm at a gathering, it is the same old
Everyone says hello. They are so happy to see me! I look so
good! Isn't everything so wonderful and lovey dovey? Aren't
they just so special because they took 30 seconds to acknowledge
Then I'm shooed off to my corner and left alone for the rest of
the day. I've got my DBC with me but no one ever tries to use
it. They've already done their job. They greeted me. What more
could I want?
I've stopped caring. I feel like if they can't make the effort
to communicate with me, I don't need them in my life. I sit
there and read on my Braille Note or write emails or something.
At least I keep busy until it's over.
When I get home, my mother will ask if I had a good time. Are
you kidding me?? I was miserable and bored out of my mind.
There's nothing worse than being alone when you are in a group
of people. Is it any wonder that I hate holidays so much?
Scott: I feel you! That's it exactly. Which is why I told Holly
she better put pressure on people to learn sign NOW. Once they
get used to ignoring her, things will never change. You would
think that learning the manual alphabet or using a DBC or white
board doesn't require all that much effort. So why do relatives
tend to shun these things?
I used to take a white board to parties, but people rarely
touched it. I had an uncle that kept shouting at me, so I offered
him the board and asked if he'd write down what he was saying,
and he just waved his hands and walked away. What exactly is
the deal with that attitude? My theory is that people don't want
to "come down" to our level. They see us as below them, so they
need to be careful and show everyone else they are NOT on our
level; they are waaaaaay above us, just like the rest of the
They treat us like talking parrots for a minute, then get back
to the world of valid people. I think it's partly an ego thing.
And they can't imagine us "invalids" have anything genuinely
interesting to say. They need fellow "valids" to stimulate their
superior intellects. I especially hate it when people prompt me
through my wife to tell them a joke. Hey, let's get the parrot
to say something funny! And then they want to hear applause for
how great it was that they "talked" to me, wasted perfectly good
time being "nice" to me. I don't feel at all accepted at
gatherings, and I am happier when people just ignore me.
Angie: I think the problem is that people are afraid they will
look stupid... or maybe they feel stupid trying something new and
different. They are too up-tight... too worried about
appearances so they won't even try.
Some times in the past my brother would teach a relative how to
fingerspell. He knew ASL and always tried to get others to talk
Those relatives would sit with him and learn the alphabet.
They''d act all special and proud. Everyone needs to marvel at
the amazing thing they did for me.
But in the end, they never actually tried to talk to me. They
take the time to learn it but they are too afraid to use it. So
what's the point of learning?
What I hate are the people who talk ABOUT me but not to me. Not
even through an interpreter. They just make comments about how
amazing I am or how great I look.
Then later my mother will say that so-and-so was "asking all
about you and said you looked beautiful and isn't that just so
wonderful?" I'm supposed to b happy this person was thinking
about me. Yet they never bothered to acknowledge my presence in
a way that I could appreciate.
Scott: I'll buy that theory. But I maintain the ego point: People
are more worried about looking strange than interacting with a DB
person. And you said yourself how they sometimes make a big deal
out of signing one or two words to you. "Look at me! More
applause from this side, please--I don't see the punch bowl
cheering!" My wife can hear well enough with bilateral hearing
aids to talk, but she feels left out a lot by her brothers and
other relatives at family gatherings.
Why is that? They can just talk to her? I really think people
look down at us and can't bear the thought of seeming to consider
us socially equal.
I always feel like I have to do extraordinary things just to be
considered adequate. I almost never go to a relative's house
other than my folks place. I hate being in unfamiliar
surroundings, too, and I have a little vision.
I do have to go when we visit the in-laws in Kansas and am not
crazy about that. It's a catch 22: If I go, I will be miserable,
have no one to talk to and have a hard time with the
surroundings. But if I decline to go, it will offend everyone and
make my wife mad at me for a week.
Lose-lose situation. And then they all gripe about me not smiling
enough. Well, f*** everyone!
I don't have a portable computer to amuse myself with. I just do
my catatonic impersonation.