"Each friend represents a world in us, a world possibly not born until they arrive." Anaïs Nin

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Monday, January 13, 2014

The "D" Word: Deaf Discrimination Toward Deaf

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 We are dealing with many outdated and unnecessary thoughts and perceptions.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.”

Do stop by our blogs and have a look at what we share:

Elizabeth Mayton, aka (e the Itinerant Teacher of deaf and hard of hearing students  http://www.ehwhathuh.com/

Lauren Storck and advocates for communication via captioning: http://ccacaptioning.org/

Need Captions? Just ask CaptionMatch: http://captionmatch.com/


  1. I can't say I've had exactly the same issue, but having grown up thru oralization (I wasn't allowed sign language as a child, I think it embarrassed my dad), I often wondered where exactly do a fit in, I'm severe-to-profound with my hearing loss, but I don't seem to belong to a particular community. I'm now 32, and just now I'm taking it upon myself to learn ASL, but I wonder if I'm going to run into the same kind of problems as you did later in life because I'm not exactly the same (and by the time I'm your age, I'll probably be profoundly deaf).

    From the hearing community, I've noticed there seems to be quite a difference in reaction between calling oneself "deaf" and "hearing impaired", or if they see hearing aids they seem to assume I need no form of assitance at all, because I got hearing aids, (I admit though, I rely much more on lip reading at times than I do with the hearing aids, if I can't see you, I still can't seem to hear you perfectly).

    So yea, It'll be interesting as I involve myself more in the deaf community and see where I stand between two different worlds.

    1. Karl, thank you for reading the post and leaving your comment. YOU are the reason these things have to change. I'm quite hopeful that by the tine you reach my age, this will all be a thing of the past. Keep getting out there, meet people and you will create your own niche where you are comfortable. Keep reading blogs, keep informed and get involved.

      I wish you much happiness and success as you navigate through the waters ahead of you, Karl.

    2. Seriously screwy. They could learn a thing or two from Dr I King Jordan (first Deaf president of Gally) who hammers home the concept that there are "many many ways to be Deaf". I've found the West Chester PA community very welcoming, even though I am late Deaf. Very sad to hear you're encountering such open hostility...

    3. Nice to see you drop in, Arron! Thank you for the reminder and quote by Dr. I King Jordan. What is sad, I am not the only one who has encountered this here. I'm hearing from others, and about others with similar stories. I'm so pleased you have found a place that not only welcomes you, but which you also feel a sense of "belonging". That is precious gift!

  2. One place you belong is the CCAC :-) - advocates for captioning and CART. Of course we invite everyone to belong! hearing or not, deaf or not, person with hearing loss or not, etc. Read more on our site please, if this interests you. We are citizen volunteer advocates. Our large community, mainly online, offers information, mentoring, support and more - all related to captioning advocacy (not other good resources). See http://CCACaptioning.org

  3. Thank you, Lauren, for popping in!! Yes! CCAC is a GREAT place find resources and support, and it's international! That's the beauty of internet!

  4. Wow. This is the first I've seen you into really deep thought about any deaf topic in general. Why the change of heart?


  5. Thank you, Thomsen. It's not a change of heart, though my heart continues to grow. This was really it's just a matter of timing and finding my voice. :-)

  6. The D thing just annoys the British mostly. We never saw any need to alter the descriptions of the DISABILITY at all. Since then we are plagued with deafhood fanatics, and 'real deaf', sadly there seems no desire to drop the whole thing, and we have been at odds ever since.