deafblind community and culture i

DeafBlind Community and culture: Living the Life

Presented to the Deaf Power Organization Kent State University

September 28, 2018

Let's start with what it means to be DeafBlind. Imagine two big
circles. One is labeled Deaf, and the other is Blind. We push
them together so they partly overlap, like a venn diagram in
math. The overlapping part is DeafBlind.

If you want to be really cool, you could do it in colors. Deaf is
blue, blind is yellow. That makes DeafBlind green. I've elected
green to be the official color of DeafBlind.

This is an awesome venn diagram, and it might be true for some
DeafBlind people, but most don't belong in that overlapping area.
I think of it more like this -- There are two big circles labeled
Deaf and Blind. Far away... way out here... there's this tiny
circle, like an island, that is labeled DeafBlind. The word
DeafBlind is bigger than the whole island. To understand what I'm
talking about, you need to know what is meant by the term
"DeafBlind."

DeafBlind is an odd, often misleading term. We are Deaf, and we
are blind, so we are DeafBlind. make perfect sense. Only it
doesn't make sense at all.

DeafBlind is an umbrella term that refers to any one with any
degree of combined hearing and vision loss. Most people who are
DeafBlind are Deaf with low vision. They may have Usher Syndrome,
which is the leading cause of Deafblindness in the United States.
People with Usher Syndrome are born Deaf or hard of hearing and
begin losing their peripheral vision in the teen years. We call
this "tunnel vision." Another symptom is not being able to see in
the dark.

The fancy name for this set of vision problems is Retinitis
Pigmentosa (RP). It would be easier to say that people with Usher
Syndrome are Deaf and have Retinitis Pigmentosa. But that's not
easy to say, and most people don't know what RP is.

The trick with RP is that a person's central vision might be
20/20, but they are still legally blind. Their vision will
probably get worse over time. Most retain some usable vision.
Others gradually become full DeafBlind.

Then you have DeafBlind people who are blind and hard of hearing.
They often use assistive listening devices and never learn to
sign.

Last we have the very small sub-category of people who are full
Deaf and full blind. I'm one of them... lucky me.

Why do they use the term "DeafBlind" when most DeafBlind people
have some usable vision or hearing? This creates an identity
issue. Some people reject the label "DeafBlind." Some don't
realize they are considered DeafBlind. They may identify as Usher
Syndrome or Deaf with low vision.

Here's something funny for you. I graduated from Kent State in
1997. I was hard of hearing with RP back then, but I do not have
Usher Syndrome. I identified as hard of hearing. I never
mentioned my vision problems. I didn't know I was DeafBlind.

Five years later I lost all my vision and hearing. In 2008, I
returned to Kent State as a post graduate student. I was the
first DeafBlind student to attend Kent State... except I already
was the first DeafBlind student at Kent State. DeafBlind can be
confusing that way.

Let's go back to that venn diagram. You may be wondering why I
made DeafBlind a far away island. If only it was a tropical
paradise. Not so much in real life. Here it is, the obvious
secret to the life of people who are DeafBlind -- We are unable
to use one sense to compensate for the loss of the other. Thus we
have needs different from those of people who are just Deaf or
just blind.

Since my venn diagram is imaginary, you can't see the label. The
word is DeafBlind. Deaf, capital D, no space, no hyphen, Blind,
capital B. It's one word, because it's one condition, a unique
condition, with it's own set of needs, problems, issues,
community and culture.

You'll see people refer to us as "deaf and blind," or "blind and
deaf" or "deaf-blind" with a hyphen. That refers to two
conditions being combined. But DeafBlind is one thing, and it's
different from just Deaf and just blind.

There are two terms I use, maybe not correctly, but it's what
makes sense to me. These terms are "community" and "culture."

When I talk about the Deaf community, I mean anyone who is
involved with people who are Deaf. Community is the big picture
and refers to people who are Deaf culture, oral deaf, hard of
hearing, DeafBlind, interpreters, family members, etc. You don't
need to be fluent in ASL to be part of that community.

Deaf culture, however, is centered around ASL. Like with any
culture, it's about a shared language, customs and values. Many
people who are Deaf culture are born Deaf, and ASL is their first
language. Some are children of Deaf adults who might be hearing,
but they still grew up signing.

I have heard it's possible for other people to find their way
into the inner core of Deaf culture, like someone who is oral
Deaf and later decides to learn ASL and take up signing full
time. I know it happens, but it doesn't look like it will be
possible for me.

I'm hearing culture. All of my family is hearing. My mother and
son can fingerspell. That's it. I use tactile signed English and
fingerspelling for receptive communication and voice for
expressive, unless I'm signing with somebody who is Deaf, and
then I struggle like crazy.

I'm part of the Deaf community but not Deaf culture. It took me a
long time to come to terms with this. The feeling I get from
people who are born Deaf or others who are very fluent in ASL is
that I'm inferior. If I was a proper Deaf person, I'd be signing
exclusively and faster and better. Plus, I'm a traitor for having
cochlear implants.

Not all Deaf Culture people act this way. Most don't. But the
ones who do are very vocal and in your face about it, especially
on Facebook. It can wear you down.

I can't change the past. I was born hearing. When I started
losing my hearing at 13, I wasn't allowed to learn sign language.
When I rapidly became full Deaf and blind at 28, I only knew the
manual alphabet.

I couldn't find anyone to teach me sign language, so I entered
the ASL program at Kent State and took ASL 1 through 5. I've
worked hard to get where I am despite numerous challenges. I
never made it to perfection with ASL. It's just the way it is.
Nobody has the right to shame me for not being Deaf culture.

What about people who are blind? The term "blind community" is
frequently used to refer to anyone who is blind or visually
impaired. But most agree that there is no such thing as blind
culture.

Culture is centered around language. There is no special language
for people who are blind. Braille is not a language. It's a
tactile code for reading English. It follows all the rules of
English grammar. Or it's used with any language, not just
English. It's a tool to access a written language.

Sometimes I'm asked about navigating Deaf and blind culture, as
if it's a cross-culture thing. It's not. I can discuss the Deaf
community versus the blind community. But I'd rather focus on
Deafblind

The DeafBlind community is diverse. Needs differ greatly from one
person to the next. There are no guidelines, no rules, that
properly define someone who is DeafBlind. I like to say that the
only rule is that there are no rules.

I already described DeafBlind people in terms of degree of
hearing and vision loss. Another approach to categorizing
DeafBlind people is through communication methods.

There are signers and non-signers. Among signers, you have those
who use regular platform interpreters, those who need close range
and people who do tactile sign language. There's variety in type
of sign system -- ASL, PTASL, signed English or fingerspelling
only (The latter is sometimes called the Rochester method._)

There are people who use speech and hearing, those who utilized
technology for communication and others who use print-on-palm.
But many DeafBlind people use a mix of methods, depending on who
they are communicating with.

I use tactile signed English with people who can sign and tactile
fingerspelling with my mother and son. I use text messages and
email with my father. I use my voice to communicate with hearing
people and oral deaf. I use shaky sign language to communicate
with Deaf and Deafblind people.

In certain situation, I ask people in the public to use
print-on-palm. That's one method that anyone can do. But some
people freak out because a DeafBlind person is talking to them,
or because they don't want to touch you.

Even some Deaf people refuse to use tactile sign language. If
they will talk using another person as an interpreter, it doesn't
bother me. But I get upset when people blow me off just because
I'm DeafBlind and use tactile sign language.

All Deaf people and all DeafBlind people have experienced this.
Someone is speaking or signing, and you don't understand right
away. You asked them to repeat, and they say, "never mind." Deaf
people do this to DeafBlind, Or they just walk away, which is a
total communication killer when you can't see where they went.

I'm not saying that all Deaf people do this. But it makes you
wonder when they complain about how hearing people treat them,
and they turn around and do the same thing to us.

DeafBlind culture is another tough topic. How can there be a
united culture with all that variety? Some people say that
DeafBlind culture is a sub-culture of Deaf culture. For some, it
is. They are Deaf with low vision or Usher syndrome. ASL is their
first language. They say they are DeafBlind culture, but what
they describe is clearly Deaf culture.

I used to say there was no such thing as DeafBlind culture. It
was either Deaf culture or DeafBlind community. I don't believe
that anymore.

What's changed my mind? The answer is ProTactile: The DeafBlind
way. Just so you know... When ProTactile was still new, it was
written as pro-tactile, no caps and with a hyphen in the middle.
Just like DeafBlind became word, so has ProTactile, and we use
caps for the P and T.

Some people make the mistake in thinking that ProTactile means
tactile sign. It does not. ProTactile can be used with tactile
sign language, or it can be used with visual sign. It can be used
by one person signing visually with another person signing using
tactile while they talk to each other.

ProTactile means touch. It is all about touch during
communication. People who are Deaf have their visual signs and
facial expressions. That's their way. We have touch. That's the
DeafBlind way.

With ProTactile, people who are DeafBlind have 100% access to the
communication setting through touch. They use constant touch to
provide and receive feedback.

A Deaf or hearing person will nod. We use tapping to show we are
listening. This tapping could be on the arm or knee or back. The
intensity of the tapping varies depending on how interested the
other person is in what you are saying, just like with nodding.

You are telling a story and the person is casually tapping. They
are listening. Then you say something about Oreo brownies, and
they tap like crazy. They are very interested, very exited. They
are saying, "Give me a brownie right now!" You know they like
Oreo brownies.

Maybe you start talking about football. They don't tap much.
Their attention is wandering. They don't give a hoot about
football. It's time to change the subject.

There are other ways to give feedback through touch. For example,
you can show a smile or a frown. You can show anger. There are
all sorts of emotions. You don't have to interrupt the flow of
conversation to sign, "I am angry." You make the signal on the
other person's body as they communicate. It's much more natural.

Take laugher for example. You say something you think is kind of
funny. The response is ha ha ha ha. Without facial expression to
go with it, that sign is so bland, so fake. It's devoid of
emotion. Ha ha ha translates into, "You just said the stupidest
thing I've ever heard in my life."

You need to use the claw. In the DeafBlind community, we say
"Feel the Claw." It means "feel the laugher." Just like with
tapping, you can control the intensity to show how hard you are
laughing. Maybe a little bit means, "Hey, that's funny." Or you
can really go at it to say, "Oh, my god, I'm dying. You are
hilarious. I think I'm going to pee my pants."

You give this feedback while the communication is happening.
There's emotion and feedback without having to stop to say. "I am
laughing at you." It's awesome!

I like to use PT on my back with an interpreter when I'm giving a
presentation. That way I know how my audience is reacting. Are
they half asleep? Is someone sticking their tongue out at me?
I'll know. With ProTactile, I will know.

ProTactile was created by two DeafBlind women from Seattle. Did
you know that Seattle has the largest DeafBlind population in the
United States? They have a real community there and lots of
services. More DeafBlind people keep moving their. They continue
to develop PT, and it's spreading around the country.

ProTactile is a socio-cultural movement. It's binding us together
through touch. Now I know that, yes, there is a DeafBlind culture
that is centered around ProTactile.

If you look up ProTactile or PTASL (ProTactile American Sign
Language) you will find a wealth of information and research.
Also be sure to watch the videos by AJ and Jelica, the women who
created PT. You can find those on www.protactile.org.

I'm on a Facebook groups for people who are DeafBlind called
DeafBlind Though. It's a great group that only DeafBlind people
can join.

I was working on this presentation, and someone posted on the
group asking members how they identify. This was quite a
coincidence.

The responses are interesting. People keep saying things like,
"I used to identify as Deaf" or "I used to identify as Usher
Syndrome" or "I used to identify as Deaf with low vision."

The ending to each comment is the same, "... but now I identify
as DeafBlind."

What's changed? Not their vision and hearing, or not too much.
It's the ProTactile movement, the DeafBlind way. When they say,
"I'm DeafBlind," they mean "I'm DeafBlind culture."

Our island is still an island, but it's growing. We are more
united now. It's wonder to finally find a place where I belong.

Angie C. Orlando

September 2018

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