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Sunday, April 5, 2015

Thought on Deafblind culture

The term "DeafBlind culture" is consistently used on social media
and in real life. If you are lucky enough to get some kind of
training on DeafBlindness, You'll likely learn about DeafBlind
culture. Yet, I wonder, what do we mean by "DB culture?" What are
the ties that bind it together? Some will argue that DeafBlind
culture does not exist. Others would take offense at that
statement. Which side is right? I would say both, and that's why
it's so hard to determine the reality of DeafBlind culture.

First, we need to consider the definition of culture. In its
broadest sense, culture refers to the attitudes and behaviors of
a social group. This leads us to another question: Is
DeafBlindness a social standard? In my opinion, it is not.
DeafBlindness refers to a disability that is severe, diverse and
affects people in different ways.

How is this so different from being Deaf? It is well known that
the Deaf community has rejected the term "deafness," which is a
medical condition. They do not consider being Deaf as a
disability. Rather, the lack of hearing is a part of their
culture. Most hearing people can't wrap their minds around that
one. Neither can I.

Even though i'm deaf, I'm not part of the Deaf culture. I didn't
begin to lose my hearing until I was a teenager. I wasn't allowed
to learn sign language. I spent countless numbers of therapy
session working on lip reading. I was never good at it. In
perfect conditions, I could hear and read lips with maybe 70%
accuracy. (By this, I'm referring to the days before I became
totally deaf and blind.) How is that good when the outside world
doesn't include perfect listening conditions? Sadly, what I went
through was the norm for Deaf education for over 100 years.

Not all deaf people are Deaf culture. You have to watch for Mr.
Bi D and Miss little d. There are also people who are hard of
hearing and use voice and listening for communication. They are
deaf but not Deaf.

What binds Deaf culture together is the same thing that binds
most cultures -- language. American Sign Language is the third
most common language in the United States. It has it's own
grammar and syntax. In fact, it might surprise you to learn that
ASL is rooted from French sign language, not British. With the
language comes social attitudes and behaviors. That means
culture.

There is no single language to unite people who are DeafBlind.
Some individuals who talk about DeafBlind culture are actually
part of Deaf culture. They call it DB culture because they happen
to be DeafBlind. If you asked them, however, you'd discover what
the describe is Deaf culture.

Communication methods within the DeafBlind community vary
enormously depending on background, type of DeafBlindness and age
of onset. The majority of people who are DeafBlind are deaf with
low vision. They probably use close range sign language. The
signing could be ASL or signed English. Some DB folk use
tracking. They will hold your wrist to follow the movement of
your hands but read signs with their eyes. Again, ASL or signed
English. The same is true of people who use tactile sign
language, like me. I tried to learn ASL but feel more comfortable
with signed English. After all, English is my first language.
It's hard to learn a second language and adopt it as your primary
communication method.

There are more ways DB people communicate. Some use just
fingerspelling. Others want you to use your finger like a pen and
print letters on their hand. With the improvement in technology,
more people are turning to computers and I-devices to help with
communication. Don't forget those who have some usable hearing
and rely on speech and listening.

When I meet a DeafBlind person, the first thing I ask is how they
prefer to communicate. You should too, because the answer always
varies. With all this diversity, how can we say we are a culture?
It doesn't seem to add up.

I believe that some DB people talk about DeafBlind culture
because they want to feel like they are part of something. They
want to be more than just disabled They don't want to be lonely
and isolated, which is all too common for people who are
DeafBlind.

I do feel there are certain characteristics we have in common.
RID published a great article in which Rhonda Jacobs interviews
Jamie Pope and Aimee Bader about DeafBlind culture. The main
aspects they identify are touch, time and social interaction.
This is what I discuss when asked to teach about DB culture.

My theory is that people who are DeafBlind are part of a
community -- especially in terms of social media where
disabilities and communication methods don't matter so much. We
have some characteristics in common and share basic needs. But
this is not culture. This isn't the same as what Mr. Big D Deaf
stands for.

If I don't believe in DeafBlind culture, why do I use Big D, Big
B DeafBlind? Chalk it up to peer pressure. I was happy enough
with deaf-blind but times are changing. More and more people are
using DeafBlind. As a leader in the DB community, I decided I
better change my tune, as well.

Now I'm going to turn the whole issue upside-down and say there
really is a DeafBlind culture. Or there might be. in some
locations in the United States, I'd say, yes, it's real. In
others, like Ohio, it's slowly developing. What I'm talking about
is Pro-Tactile -- The DeafBlind Way.

Pro-Tactile is a socio-cultural movement started by two women
from Washington State. Pro-Tactile means touch communication.
It's not the same as tactile sign language. People with any
degree of vision and hearing loss who use any sort of
communication method can benefit from Pro-Tactile. It helps us
receive cues about aspects of communication we can't see or hear.
Feedback about the communication process is another part of
Pro-Tactile. People who are DeafBlind are no longer struggling to
fit their communication method into an audio-visual world. Now
they are celebrating the success of a movement that makes
communication truly accessible. It's the "Way" of people who are
DeafBlind. As time passes and more people learn about it,
Pro-Tactile could become the unifying aspect of a true DeafBlind
culture.

For more information about Pro-Tactile: the DeafBlind way
visit www.protactile.org. There are four Vlogs (with text
transcripts) available on the site, so you can see Pro-Tactile
in action by the individuals who created it.

Angie C. Orlando
April 2015

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