Deafblind culture and ableism

March 14, 2019

DeafBlind Culture and Ableism

Presented to Hiram College students taking ASL 2 or Ableism and
Ageism

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.

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 totally blind.

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

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.

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, community and
culture.

My story is complex. I wish I had better sign language skills,
like people who are born Deaf.

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
haven't reach fluent ASL. Maybe in the future.

I found out about seven years ago that I have a super rare
genetic disorder called PHARC. Around 40 to 50 people world-wide
have been diagnosed with PHARC. The name stands for the main
symptoms: Polyneuropathy, Hearing loss, Ataxia, Retinitis
Pigmentosa and Cataracts.

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.

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.

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 new, it was written
as pro-tactile, no caps and with a hyphen in the middle. Just
like DeafBlind became one 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 laughter 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 laughter." 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 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.

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.

Now I want to talk about ableism, the discrimination of people
with disabilities.

I needed to research the subject, so I did a Google search. All
of the hits were videos. That's no good for me. I had to have a
friend send me some articles. I wonder if that's an example of
ableism. Web accessibility and access to information are serious
problems for people who are DeafBlind, especially those who read
braille.

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." Or
they just walk away, which is a total communication killer when
you can't see where they went.

How about ableism and fair housing? I live in a twin-plex next to
an apartment complex. The landlord receives money from the
government for renting to people with disabilities.

I like my home and have no plans to leave anytime soon, but I
often experience problems with my landlord.

Honestly, I get the impression he thinks I have cognitive issues.
If I text or send him an email, he doesn't reply or act. I am
forced to have my father contact him on my behalf. It's
humiliating. I'm 45 years old and have lived here for over six
years. But complaints are only valid if they come from my dad.

This winter was a dangerous, on-going mess that I couldn't get
control of. It started with the hot water tank not working. I
took 4 cold baths in November. We finally got the repairman over
to fix it. He re-lit the pilot light, and said it was fine. Nope.
It took a week to get him back to fix the real problem. The tank
needed a new control panel.

That's when I smelled rotten eggs. I knew it was a gas leak, but
no one else could smell it. They didn't believe me or do
anything.. I was scared. I live in my apartment for two months
with a gas leak.

In late December the heater wasn't working right. They looked at
it and said, "The furnace is on, it's blowing air, there's
nothing wrong with your heater."

It was blowing air... cold air. At this point there was a gas
leak, and the heater was messed up. I was freezing and desperate
for help. A friend and her husband came over. He smelled the gas
leak and confirmed that the heater was blowing cold air. Why did
I need someone else to confirm what I already knew?

He turned off the hot water tank to stop the gas leak and the
heat came back. So I had heat, no gas leak and no hot water.

The repairman returned, fiddled around and declared everything
was fixed. Once again, I smelled rotten eggs. I knew there was a
gas leak and this time I would not sit quietly and pretend there
wasn't. My friends came over again, and we called the gas
company. They checked it out and said the hot water tank was
leaking gas. The guy wrote out his findings and taped it to the
hot water tank. The repairman came back, followed the
instructions, and finally everything was fixed. It was January
by that time.

Lack of interpreters is another way I struggle with ableism..

For years and years, I was part of a panel presentation at a
major medical center in Cleveland. The panel was called "Meaning
of Disability." and was presented to first year medical students
and staff. It was my doctor who got me involved.

I did this presentation eight or nine times. We got great
feedback. I loved being part of it.

Last year the doctor contacted my interpreter friend and demanded
she had to find and pay for my interpreters, or I would not be
part of the panel. What? What?

This friend was just an interpreter. She didn't own an agency and
didn't have any role in the panel, other than she helped the year
before. It made no sense. It was out right discrimination.

The panel went on without me, just like the doctor threatened. I
cried on the day of the presentation. It felt so wrong that I
wasn't there. The only reason they dropped me was the the need to
pay interpreters. As if a major medical center doesn't have the
money.

In other words, I was removed from the panel because I'm Deaf.
Perhaps that is the true meaning of disability.

Now I'm at war with the medical community and interpreter
agencies. I hurt my foot in June. In January I was diagnosed with
tendonitis in my thumb. I still haven't received medical
treatment.

Appointments have been postponed and canceled because of
interpreter issues. Last week we drove to Cleveland for an
appointment, but there was no interpreter. The next day I was
supposed to start physical therapy, after two months of
re-scheduling. No interpreter.

Medical staff blames the interpreter agency. The agency blames
the medical staff. Then I get blamed. All I want is medical
treatment. My need for an interpreter is why I'm not getting it.
Again, I'm being denied fundamental rights because I'm Deaf.

It's not easy being DeafBlind, and I also have physical problems.
I can't leave my house without help. It's not easy. I do my best
to cope. I have a strong will to live, and that keeps me going.

But whenever I get hit with ableism, I feel something die inside
me. It's a reminder that I'm not whole, I'm not valid, I don't
have a place in society. It's a horrible feeling.

Angie C. Orlando

March 2019

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