deafblind is not deaf plus

DeafBlind, Not Deaf-Plus

Presented to Deaf Culture's Club/Deaf Power Organization

Kent State University

April 30, 2019

Hi. My name is Angie Orlando. You've probably seen me around. I
am a woman, mother, aunt, daughter and sister. I am a writer and
author of Through the Tunnel: becoming DeafBlind. I am a cat
lover, Harry Potter fan, sugar-freak and Dr. Pepper addict. I'm a
voracious reader, a book fairy with rainbow wings and... and...
and.... I happen to be DeafBlind.

That's how I think of it, at the end of the list, and I happen to
be DeafBlind. My disability is part of who I am, but it doesn't
define me or control me.

Why do we need labels? Why can't I just be Angie? I suppose if I
want services, I need a label. I won't get an interpreter if I'm
just Angie.

Labels and identification are different. Labels are imposed on us
by society, to categorize our limitations and needs.
Identification is how we choose to be known. It's not always as
simple as it appears.

I know some people who are oral deaf who do not identify as Deaf
culture. There are people who are hard or hearing who do identify
as Deaf. There are even children of Deaf adults who are hearing
but self-identify as Deaf.

I fit under several labels: Deaf, blind, physical handicapped and
developmentally disabled. I identify as DeafBlind.

Let's talk about deaf-plus. Is it a label or identification? I
don't know. I did some research on the topic, but my technology
is limited, and I can't view videos. I came across this web site.
I don't know who created it. The title is "Supporting Families
When Hearing Loss is Not the Only Condition."

They state that "Deaf-plus refers to people who are Deaf or hard
of hearing who have other conditions that affect them medically,
physically, emotionally, educationally and socially.

Examples of these "other conditions" are: visually impaired and
DeafBlind, developmental, cognate and intellectual impairment,
orthopedic and physical impairment, specific learning disability,
autism, emotional and behavioral impairment, syndrome related,
traumatic brain injury and other health impairment.

Topics related to deaf-plus include: cycle of grief, on-going
medical concerns and life and death. "My Deafness won't kill me,
but I might die because..."

Bah! Enough of that. Why are they even talking about life and
death and the cycle of grief? Can they be more grim?

I knew this page was no good from the language: deafness,
deafblindness, impairment and all those big words ending in "ly."

When this club decided to do a meeting on deaf-plus, they asked
around to find people who are deaf-plus. My name kept coming up.
Thank you. I love you too. But I reject the label deaf-plus. How
can that be? I'm deaf and blind and have trouble walking. That's
three disabilities. I must be deaf-plus. I'm not, and I will tell
you why.

First, deaf-plus is vague. Plus what? You don't know. Does it
matter? Yes, because all those conditions have different needs
and require different services. DeafBlind is very different from
Deaf with autism or Deaf with a cognitive disability.

I recently used the term deaf-plus while talking about someone
else. I knew what "plus" meant for him but didn't feel it was my
place to say. I used deaf-plus because it's vague. I could
communicate that there was something else but didn't need to say
what. It was an avoidance technique.

Second, let's face it. A lot of people think deaf-plus means Deaf
with a cognitive disability. In this case we say "plus" to avoid
using a "negative" term. It's like "Deaf-plus", wink, wink...
"You know what I mean.

DeafBlind tends to include a communication disability and
information disability. We have trouble accessing social roles
and social settings. Think about it... Someone talks to me, and I
don't answer. They speak louder, but that doesn't help. The
person who is now screaming at me gets this idea... "Oh, she
must not be right in the head."

I have an awesome brain, but in this kind of setting I need a
communication facilitator.

It gets worse. I'm not fluent in ASL. My pace is slow, and I
don't know all the signs. Communication takes longer. People
think, "Got to be some intellectual issues with this one."

I fight this stereo-type all the time. The last thing I want is a
label that could imply that I do have a cognitive disability.

Another reason I don't like deaf-plus is that it shouts, "Deaf
first, Deaf matters most, Deaf before everything else." My life
can't be described as Deaf first, other things second. That
pattern doesn't work.

I brought up this discussion on a Facebook group called DeafBlind
Thought. One person said, "I was born deaf and grew up oral, no
signing. I later learned to sign on my own, but I'm isolated and
don't have the chance to use it much. Then I started losing my
vision. It's harder, but I'm doing okay."

He summed up his story by saying, "Deaf-plus doesn't fit my life
at all."

There are people who are Deaf with another disability, but they
don't identify as Deaf first.

For example, I know someone who has an intellectual disability
who is also deaf. Her parents, her school and professionals
focused on her cognitive problems first. Eventually she went to a
school for the Deaf. They didn't know how to deal with her, and
she was sent home.

I know someone else who has a learning disability. He's also hard
of hearing, if you need to know. He hears well with hearing aids
and identifies as learning disabled only.

Here is the big reason I reject deaf-plus: I am not deaf.

You are probably looking at me like I have three heads. Three
heads to go with my three disabilities. But I only have two. I'm
not Deaf, I'm DeafBlind. We write this as deafblind, capital D,
capital B, no hyphen, no space. It's one word because it's a
single, unique condition. It's not deaf, it's not blind, it's
DeafBlind.

I have two disabilities. I'm DeafBlind and I have trouble
walking. I say this because my needs as a DeafBlind person are
totally different from someone who is just deaf or just blind.

There is also a cultural component for people who are DeafBlind.
It's not about ASL, although most DeafBlind people are better
signers than me. What binds us together is touch and the
ProTactile movement.

ProTactile means touch communication but does not refer entirely
to tactile sign language. It's much bigger than that. ProTactile
uses touch during communication, in specific ways, that allow the
DeafBlind person 100% access to a communication setting. It
provides on-going feedback without the need to stop the flow of
conversation.

Two DeafBlind women from Seattle created ProTactile, which is
known as the DeafBlind way. It's a socio-cultural movement that's
uniting DeafBlind people through touch. ProTactile is the center
of our culture, and it is beautiful.

When I asked about deaf-plus on the Facebook group people said
things like:

I'm Deaf-Blind

What's deaf-plus?

That's no me, it doesn't fit my life.

Why do we need labels?

I'm human.

I agree. Deaf-plus is something out there, it's there, it's a
label, but it has nothing to do with me.

I'm DeafBlind. No, I'm Angie. Who are you?

Angie C. Orlando

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