Because of our experience which I share in Michelle's book, I have embarked on a new project with Nancy Kingsley, the director of Hearing Loss Association of America - Pennsylvania (she is also the chapter leader of Lancaster County Hearing Loss Association of America) and Terri Avis, a captioner from Landisville. The three of us have collaborated together and are working on presentations and demonstrations for CART - captions for local church services. We are meeting with a church in Dauphin County on the 21st to discuss how they can provide captions for their members.
Fabulous Husband and I received a note in a Christmas card from another Church we visited in Lancaster with a number to call. They would like to know how they can become aware and helpful for the deafened among their patrons. We look forward to arranging a meeting with them, as well.
Below is my article from the book by
Michelle Jay "Don't Just Sign - Communicate! A student's guide to the deaf experience". The link to order the book is below this post.
(NOTE: I use the following terms interchangeably so as not
to overlook anyone’s preference: deaf, Deaf, hard of hearing, hearing impaired,
hearing loss, people with hearing loss, deafened, late deaf, late deafened)
The “D” Word : Deaf
Discrimination Toward Deaf
By Joyce Edmiston
I was diagnosed with a hearing impairment when I was a
child. It began as a mild loss, then progressed to moderate, and now, as an
adult in my mid-50’s, I am deaf, or late deafened. I have been across the hearing
loss spectrum. While I’ve dealt with discrimination in my younger years from
many in the hearing world, peers, family members, co-workers and friends, I had
no idea how prevalent discrimination is within the deaf community toward other
deaf or deafened people.
It seems to me that while cultural diversity is welcomed in
so many areas of our society today, when it comes to deafness, we are decades
behind regarding acceptance, compassion, tolerance and understanding. We are
dealing with many outdated and unnecessary thoughts and perceptions.
I first began to notice this when I moved to Pennsylvania
from Oregon. I thought I was dealing with hearing people and their
discrimination when we began attending a multi-million dollar mega church. There
was no mention of “interpreters for the deaf and hearing impaired” on their
website, announcements or flyers. After attending several months with Fabulous
Husband and our son, someone asked if we attended the ASL interpreted services.
“What ASL interpreted services?” we inquired. It turned out that they had one
service each Sunday morning with interpreters available. We later learned they
even had a small group, which was not included in the small group bulletin
board list. We were astounded this information was omitted from the website,
announcements and flyers.
Fabulous Husband and I showed up the following Sunday
morning for ASL services and we went down front and to the right of the stage
area where the sign was affixed in the seating area “Reserved for Deaf and
Hearing Impaired”. It was lovely to see this inviting sign, not just for deaf
and hard of hearing, but for the “hearing impaired” people who have lost their
hearing like myself, and those in the process of losing their hearing.
A deaf woman approached us with an interpreter wanting to
know why we were sitting there. I signed that I was losing my hearing. She
motioned to the auditorium and emphatically signed, “You’re not the only one”. She looked at me rather accusingly and I felt
defensive, as if I had to justify my deafness and why I was sitting in the
reserved area. I’m sure she could see my hearing aids, it’s one of the first
things people notice about me.
Exactly! There are so many others
who need to have access, and need to know this was available to them.
A few months later, when we did finally find a mention of
ASL interpreters on the website, it was but a small mention with abbreviated
language as “terps” hidden deep within the pages. Many of us with hearing loss
look for specific key words, “interpreters” “hearing impaired” etc. When I
mentioned this, on several occasions through the email on the main website,
later on open forum of the churches’ Facebook page, my concerns were always
brushed aside. I was told by the Deaf to take my comments and requests to
“private”. It felt as if they were ashamed to announce that deaf and hard of hearing
people were present, and there was no mention of accessibility to language be it ASL
interpreters or captions (CART service).
This wasn’t the first time I ran into this mindset in
Pennsylvania. When I first arrived to this state, we were living in Harrisburg.
I was given the email address of a woman who was involved with a deaf women’s
group that met monthly at a conference room in a major grocery store in the
Camp Hill area. I wasn’t able to come to some of the meetings because of my
husband’s evening part time job – someone needed to be home with our 4 year
old. It turned out that there was a
meeting on an evening when Fabulous Husband would be home. When I emailed that I could attend that
one, she said it was a cookie exchange for only “D” Deaf people, and I couldn’t
come. It was a Christmas party. I was so lonely, being new to the area, trying
to connect with other deaf people and people with hearing loss. I’m sure I was
not the only one to have experienced this kind of exclusion from this group. If
it happened to me, I know it has happened to others. I was longing to be
accepted, included as I was with the community I had left behind so many years
ago. All kinds of Deaf, and people with hearing loss, and, even hearing people were
welcomed to all activities.
When I was living on the West Coast, I was active with an
organization we called Bay Area Resources for the Disabled, run by ALL kinds of
disabled people. Mental illness was represented, returning disabled Veterans, the blind
and the Deaf and the hearing impaired of our community. Many other disabilities
were represented. Each was equally important and advocated. We put out a
newsletter that educated and brought awareness to the community where we lived
on various issues, each article written by someone representing their own
disability or issues and barriers each deals with. It was run voluntarily and
sadly dissolved from lack of donated funds and grants. We all worked together
and we were inviting and inclusive.
There was also an active “SHHH” (Self Help for Hard of
Hearing), which was an odd name for many of us because those of us losing our
hearing referred to ourselves as “hearing impaired”. We had Sign Language
provided by the local instructor from the College, as well as open captions up
on a screen. We were inclusive and worked together. This was in the early
1990’s. There was no discrimination, division or segregation between us. We
even had hearing people attend some of our meetings, spouses and friends of
deaf or hearing impaired people. We held community events at the local library
open to everyone.
I miss this. I especially miss this now that I’m living in
an area of the country known not only for “shunning” among the Amish and
Mennonites, but also within the deaf community of some churches.
Remember that church that had the sign “Reserved for Deaf
and Hearing Impaired”? Shortly after I wrote a blog post about how some
isolated communities choose to only acknowledge “Hard of Hearing” and how they
choose to discriminate against those who use the term “hearing impaired”,
someone at the church removed the signs with “hearing impaired” and put up a
sign “Reserved for Deaf and Hard of Hearing”. I also got an anonymous comment
left on my blog from a Deaf person that wanted to keep Deaf community small (at
church) and that Fabulous Husband and I were too pushy. I was accused of making
things worse for the “deafies” and told to mind my own business and pay
attention to my own life instead of preying on the deaf,,,, despite the fact
that I, myself, am deaf!
I was simply voicing what so many others had voiced before me.
There is a need for a real Deaf and Hearing Loss Ministry, a welcoming place
for people looking to connect with others who share the common barrier of
communication due to deafness or hearing loss. A place that welcomes
everyone and provides accessible means to language for everyone with ASL, open
captions and looped FM systems.
It was our second year attending this mega church that we
found out one branch was actually was putting the ASL interpreters, deaf and
hard of hearing at the back of the church. For those of us who are visual, and
use hearing aids, we need to be up front and to use the amplification of the
speakers to help us hear. Not all deaf learn Sign Language. Not all deaf use
hearing aids. Not all deaf need Captions. However, in order to serve ALL deaf,
hard of hearing, the hearing impaired or people with hearing loss (whichever
terms you choose), all of these accessible solutions need to be provided, and
the Deaf and hearing impaired should always be placed down front where they can
use their eyes to see to hear and the audio amplifiers to be picked up by their
assistive devices. Captions should be on the wall or a screen for those who
need to read what is being said.
When I suggested the church use captions, put the words on
the screen or on the wall, they told us it can’t be
done. For two years, I emailed and requested a Deaf ministry and for it to be inclusive
for all deaf, and for people with hearing loss for language accessibility with
ASL and with captions. For two years, I
advocated the need to announce online and in the flyers what was available for
those of us who needed ASL accessibility. For two years, I was told by several
ministry leaders of this multi million dollar church that there was no money in
the budget for such a ministry, despite the fact that they are financially
healthy, and despite the fact that there is a population of over 4,000 Deaf
people (that we know of) in our county
alone…and that doesn’t include people coming into deafness through the aging process
or other causes of deafness.
The blatant discrimination of the “hearing” men of this
organization was unsettling, but worse, yet, was the Deaf community not only allowed this, they
perpetuated it by being closed and unwelcome to new people. One of the
anonymous messages I was sent simply stated the person writing did not want to
be in a big Deaf community. This was confusing because aren’t churches about
building relationships with others, being open, inviting and caring, especially toward the strangers and travelers among us? How many other people over the years
walked through those doors and experienced the exact same thing my husband and
I did? This doesn’t have to happen to anyone, and it shouldn’t.
The most difficult issue I had to deal with came when
Fabulous Husband was offering his tech support at a new satellite branch for
this church and one of the pastors point blank told him that while my (hearing)
husband was welcomed to come and serve, they wanted me to remain at the other
branch, despite the fact they had an interpreter available at the new branch.
They felt my request and advocacy for language accessibility and a ministry for
those of us who are deaf or suffering from hearing loss was “aggressive”. I
don’t understand why having to ask for accessibility and inclusion for deaf and
hard of hearing would be “aggressive” when if one were to ask for a ramp for a
wheel chair, they would be right on the project, spending no limit of funds to
be accommodating without any repeated requests. They certainly wouldn’t let two
years go by with anyone constantly requesting any other accessibility.
Perhaps they just don’t understand the barriers that deaf
and hard of hearing people deal with. Perhaps because this is an “invisible
disability” we just don’t matter to them. Perhaps the small deaf community within
the church itself wanted to remain closed, exclusive, and not be open to new
residents coming from other regions that are of a different kind of deafness.
Perhaps these are all learned behaviors from a community so closed for decades
that these unprogressive perceptions can’t be changed.
Yet, deep within my heart and soul, I hold out that they can
change these perceptions and catch up with the more progressive and accessible
areas of our nation. I would like to think they would revisit the tenets of their
faith and practice those virtues by beginning to accommodate the needs of their
neighbors and start to truly be open, inviting, accommodating and accessible.
While I’ve lived in many different places in the U.S. and in
Europe, I had never lived in a place where people were so discriminative within
their own group. Where does one draw the line of being “deaf enough”?
Since I discovered the world of blogging and began blogging
myself, I have noticed a pattern that greatly disturbs me. While most of these
discriminative ideals are being handed down generation to generation, the
greatest injustice is coming from Ivy League Deaf colleges here on the East
Coast. This absolutely astounds me. One place where we expect greatest human
evolvement, progressive thinking and education is the place that is not only
closing its mind to new world ideals of tolerance, acceptance and
understanding, is instead teaching and promoting discrimination. If you want to
know more about this, you can visit Mike McConnell’s blog where he has followed
many of these examples over the years and documented them.
http://kokonutpundits.blogspot.com/
Where do we begin to break down the barriers to be more
accepting?
We begin with ourselves, and the terms people use to
describe their deafness or hearing loss status. Recently, I started a
conversation on a Facebook forum for Deaf and Hard of Hearing Bloggers
administrated by Mike McConnell with the status comment, “Respect the terms
people choose for themselves-whether they choose deaf, Deaf, Hard of Hearing or
Hearing Impaired.”
Lauren Storck of Ccac Captioning joined in the conversation
by adding, “Or ‘deafened’ - for many thousands, this is an identity too; and
btw, some also prefer ‘people with hearing loss’ rather than ‘hard’ or ‘impaired’-
whatever works as others say!”
Mike McConnell followed up with his excellent reply, “Absolutely.
One cannot push their own identity onto others. Yet, many continue to try and
redefine what our identity is supposed to be. And continue to be clueless and
disrespectful of the diversity of people, ideas and preferences out there.”
Elizabeth Mayton, also known as (e - the itinerant teacher for the
deaf and hard of hearing children, also chimed in to the conversation with, “It
is too bad that we have to ask others to respect people's choices in how they
identify themselves with different terms that they are comfortable with or that
makes sense to them. Why is there this need to lump people in certain
categories and to tell others how they fit or don't fit in certain groups? Why
do people let an issue like this upset them? It is ridiculous.”
By accepting one another’s defining terms, deaf, Deaf, hard
of hearing, hearing impaired, people with hearing loss, deafened, late
deafened, and whatever other terms that may be used in the future, we can break
down the barriers of discrimination and chip away at the chasm that divides us.
All of us are dealing with communication barriers one way or another as we
journey through a world that caters to the hearing community. Together, we can
reach across the communication divide and implement access to language in
alternative forms that can benefit us and others.
While some people tell me they are offended when someone
uses the phrase “hearing impaired” because they believe it makes them appear to
be an impaired person, this is an outdated view. Today, millions of people who
could once hear but have lost some degree use this term. It aptly describes
their status of hearing loss. They could once hear better, but no longer. Just as
a person’s vision becomes impaired, so has their hearing. It is an acceptable
term for them.
For others, they choose the term “hard of hearing” over
being “hearing impaired”, stating that they aren’t impaired people. However,
this implies they would rather be “hard” people than “impaired” people. These
thoughts are outdated, as well. Even so, we need to accept the terms people
choose to use for themselves regardless.
Last season on “Switched at Birth” this issue was presented
on an episode called “Uprising” where the Deaf School was holding a sit-in
protest to keep the school open. While there was a pilot program at the school
to allow hearing students in, there was a hard of hearing young man who told
his story how he floundered in mainstream school, but flourished in the deaf
school. Yet, a Deaf student in the group didn’t want this person involved
because he wasn’t “D” Deaf, culturally deaf, or deaf enough.
How deaf does one have to be to be accepted?
What about the people stuck between the two worlds who don’t
function well in either the hearing or the deaf world?
Do you see the injustice and the walls that discrimination
builds? We have enough barriers to plow through on the communication front
without adding division within our communities.
We aren’t “better” or “superior” or “less” people because of
our status of deafness, or hearing, or group we belong to any more than the
color or shape of the shells we call bodies that house our hearts and souls.
As Deaf people and people with hearing loss, we owe it not
only to ourselves, but tomorrow’s people to set aside the barriers we create
and provide a supportive, compassionate, accepting community within our
communities, open to all. Many of today’s “hearing” people will be tomorrow’s
deaf and deafened people. We need to set the example for us today of the
promise of what tomorrow can be for us and for them, accessible and inclusive
with respect and compassion toward one another, regardless of the label we each
choose to refer to our status of hearing or deafness. We should not take
offence to any of these terms, and we should not force old perceptions and
views that no longer serve us onto others.
Let us be the change we wish to see in the world by being
less offended with the new terms of deafness, and accepting the terms others
choose to use, even if it differs from our preferences. Let us be inclusive,
recognizing that some of us need ASL, some need captions, some need assistive
devices, and some, like myself, prefer to use all means available.
These are personal choices which we should allow others freedom to
choose, and respect their choices. Above all, we need to work together to come
up with suitable solutions to help one another, not just ourselves.
As author Shanna Groves reminds us with her
#stophearinglossbullying campaign, “Hearing Loss bullying stops with US.”
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