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It's hard for people to "get" something when
their own experiences aren't really that similar. This "getting it," or understanding,
or lack thereof, can come through in really small ways. I've been thinking about this for a number of
reasons, one being that I finished listening to Amy Poehler's book "Yes,
Please" recently. There were a couple
things that really stuck out to me, and it also got me thinking about how
celebrities can bring a great deal of attention to various issues. How
things like catchy slogans or gimmicks (for lack of a better word) - like the
ice bucket challenge for ALS - can raise large sums of money.
I thought that though Amy Poehler recognizes how lucky
she is, and appreciates what she has achieved, there was something a bit
insular in general about her outlook. This really came through at the end of her
book, when she writes about technology.
She talks about how people (herself included) are addicted to things
like smartphones, e-mail, etc. This is
her experience with technology, and she completely overlooks the ways in which
technology helps people. For example, allowing
people - like myself - who are limited in terms of what they can DO, to connect
with people online. I'm not saying she
should have focused on that, but she doesn't even mention how technology can
make a real difference in people's lives, and I suspect she's not the only one
who doesn't think about this.
This lack of reaching outside of your own experience,
hearing what someone else is dealing with, frustrates me. My invisible disorders make me sensitive to
issues that I think some people don't spend much time thinking about. I've experienced, in small ways, other people
not "getting" something because it's beyond their own
experience. I know it's difficult to
imagine being in someone else's shoes, but it's also really important to try to
do just that, or to acknowledge you really DON'T know what something is like.
I know people don't always want to put in the effort to
think about others. Sometimes I'm not in
the mood to think about other people's situations. I'm very into myself, and I really don't want
to hear about someone else's news, good or bad.
I'm guessing that most people with chronic health conditions (and some
who don't) feel this way; have times when they're not up for hearing about
someone else's life. And some things are
easier for people to think about than others.
I think my MAV is a bit easier to grasp in some ways, although no two
people's experiences are identical. My
vision disorder is definitely harder for people to "get"; many people
don't understand the complexity of vision.
Which brings me to my point about celebrities and raising
money. Celebrities - people who are
high profile - can have a truly magic touch in bringing attention to an issue
where it is sorely needed. This has
happened numerous times. While there
have been a few celebrities who have given an occasional interview about their
vestibular disorder - Kristen Chenoweth and Ryan Adams come to mind - to my knowledge
there hasn't been anyone who has really held the public's attention.
I feel jealous when I hear about the ice bucket
challenge, or a celebrity who is blowing the door wide open about a particular
issue. It would be so absolutely
wonderful to have someone do the same thing for vestibular and vision
disorders. Vision is so intricately
connected with balance; a discussion of balance isn't complete without
including vision. So it makes sense to
me to pair vision with the vestibular system, in terms of bringing both into
the light of awareness.
September brings VEDA's Balance Awareness Week, and I'm
hopeful that it will be successful. If
you don't have a particular person who can get everyone's attention, I think it
really does take an organized effort to create change. Unfortunately, I haven't found such an
organization for non-disease related vision problems for adults. So I will keep posting what info I find that
helps bring awareness about the complexity of vision. How important vision is for processing all
the sensory input in the world around us, and how integral vision is for
balance.
I believe there's a growing awareness about health issues
in general, and people like myself with invisible disorders need to advocate
for this awareness. Because then there
can be understanding and hopefully learning, and money for research that
provides answers. I don't believe that
doing this advocacy, or being on the Ambassadors Board of VEDA is why I got
invisible disorders, nor why anyone else did, for that matter. But it's definitely good to feel like I can,
through sharing my journey, offer hope and make a difference towards building
awareness.
