(NOTE: In this article, Joyce uses 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)
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 We are dealing with many outdated and unnecessary thoughts and perceptions.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 beside the interpreters, 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.
First published on Joyce Edmiston’s blog, and republished by kind permission.
Joyce Edmiston was a hard of hearing child who grew up to be a deaf adult. She volunteers her time teaching Sign Language to preschool and early elementary “hearing” children once a week. She writes as Xpressive Handz, and you can find her blog here.
Check out what Limping Chicken’s supporters provide:
- Phonak: innovative technology and products in hearing acoustics.
- Bellman: hearing loss solutions
- Ai-Live: Live captions and transcripts.
- Deaf Umbrella: sign language interpreting and communications support.
- 121 Captions: captioning and speech-to-text services.
- Signworld: online BSL learning and teaching materials.
- STAGETEXT: theatre captioning.
- Krazy Kat: visual theatre with BSL.
- SignHealth: healthcare support for Deaf people.
- Deafinitely Theatre: theatre from a Deaf perspective.
- Lipspeaker UK: specialist lipspeaking support.
- SDHH: Deaf television programmes online.
- Sign Solutions:, language and learning.
- Lexicon Signstream: BSL interpreting and communication services.
- Action Deafness Communications: sign language and Red Dot online video interpreting.
- Hamilton Lodge School in Brighton: education for Deaf children.
- RAD Deaf Law Centre: legal advice for Deaf people.
Andy not Mr Palmer but another one
January 16, 2014
Anyone who doubts the outpourings of spite and bitterness from a minority of deaf people need only look, either in the BBC See Hear forum which is still online but is read only. Or else look in the original Yahoo Deaf-UK forum from the early years.
The BBC in particular don’t have a clue how to run a forum, they think they can carry it off with a high-and-mighty attitude and some very arbitrary message removels. In fact because the forum has an automatic message removal service, contributors learned to play the system so as to have a good troll before getting caught. It destroyed both forums.
The fact is that the Deaf world is haunted by a tiny minority of spiteful people who just love to stir up trouble and dissent amongst other people. Perhaps they attack other deaf people because they don’t like being deaf.
Whatever the reason the deaf online world has been badly damaged by these manipulators and one thing is for sure, they don’t have the wellbeing of the Deaf community at heart!
pennybsl
January 16, 2014
Epic article……absolutely honest from the bottom of your heart, Joyce.
Churches become victims of ‘institutional organisation-isms’ when they expand and branch out.
We Deaf Christians in the UK are horrified at the suggestion that your husband go to a different church site from where you attend. It goes totally against Christian principles of holding families together.
What you have described in your article is audism, be it intentional or non-intentional.
We need good role models from the top hierachy to improve labellism of our deafness, that it is imperative those of us who accept our deafness as a lifelong feature in our own lives should not be constantly undewrmined by “d/Deaf (& hearing) bigots”.
Life is too short.
Xpressive Handz
January 16, 2014
Thank you, Andy and pennybsl, for reading and contributing to the conversation. Pennybsl, we were just as horrified at the suggestion, as you.
Lisa
February 21, 2014
Sorry that you did not get an explanation of why the person involved with the deaf women organization said you would not be able to attend. This particular party was for the current deaf members of this group. They already had made reservations at a restaurant with gift and cookie exchange. It was already set. They are no longer a organization with membership dues. From time to time they may get together to dine out. They did not ‘shun’ you on purpose. The timing was just off. At one time, we had a person who lost her hearing gradually, knew some signs. But the meeting would be too fast for her to follow, so I had to sit next to her to write what was being signed, to help her along. It was tough, she stayed and attended meetings, she admitted she got most of it but it was okay. She understood and was patient.
All I can do is give you some suggestions. When I first moved to PA from the east coast, it took me almost 4 years to start to fit in. I am deaf and have signing skills, both PSE and ASL. I was just an outsider because I did not attend the deaf schools in PA. That was the way it was, not sure if it is the same nowadays. This was back in the early 80’s. Go to the deaf clubs and meet quietly. You kept saying the deaf have mentioned that you were pushy or aggressive. So that is why I suggest to start out gently and slowly. Learn about the deaf culture first. You are entering their world, need to respect the deaf culture.
There is a deaf club in lancaster called LAD (Lancaster Association of the Deaf). There is a deaf club in York called YAD, York Association of the Deaf). There is a group of deaf and hard of hearing and hearing who are learning to sign meet once a month on a friday at Wegman’s in Mechanicsburg, Pa. Also there is one in Red Lion which meet at the book store. Not sure if its barnes and noble?
Also there is a group of deaf and hard of hearing Senior Citizens (KDSC) that meet once a month in Lancaster. It falls on last Tuesday of the month.
Go to the Lancaster Deaf and hard of hearing services, go to Office of the deaf and hard of hearing (ODHH) in Harrisburg.
And hopefully you will find the right church for you. There is a church in Strinestown that used to be called Bible Baptist Church right off Stringestown exit off route 83. The pastors are hearing but they do have two pastors who can sign in ASL. They take turns. They reserve the first 3 or 4 pews on the right side for the deaf and hard of hearing.
There is one in Red Lion also , the Living Word, something like that. They have words on screens for the scriptures. Yes the deaf are in the back with the terps with them. The deaf chose that because they were comfy up there.
Maybe you know all this already.
Joyce Edmiston
February 22, 2014
Hello, Lisa,
Thank you for explaining more about the group that was holding meetings at Giant.
Thank you also, Lisa, for sharing your own personal experiences, and also for your suggestions. Many years ago, I was involved with Deaf community and I was fluent with Signing. It was a very inclusive community on the other side of the continent. I’ve been in this area going on 8 years.
First, it wasn’t the Deaf saying I was being “pushy” or “aggressive”. It was a clergy person after many request from me over time for changes to include us. I even sent videos to them by professional interpreters to help them learn proper protocols and seating arrangements and etiquette for today’s deaf and hard of hearing. They are quite behind in this area when it comes to this.
I believe the deaf in this area have been so isolated and cut off from other parts of the country, they just have not progressed, and being steeped in tradition, they are following standards that are no longer appropriate in today’s changing world. I think they have been used to “sitting at the back of the bus” so long, they don’t realize segregation has ended on all fronts, and they don’t even recognize discrimination.
My husband and I were invited to Deaf club in a small building in Lancaster, but when we showed up, no one was there. They moved it somewhere else that night and didn’t tell us. They had my email addy, but did not bother to tell us.
I’ve attended Wegman’s meetup, they are very nice, but it meets too late in the evening-we have a young son that doesn’t do well staying up long after dinner. It is about a 45 minute drive just one way, depending on traffic. Most of these places you suggested are quite far, and attending those on school nights doesn’t work well with our boy.
Like many of today’s deaf, I prefer to sit near the front so I can be near the loud speakers for the hearing aids to pick up sound. My late deafened friends need to be up there to use their assistive devices. You see, I’m not the only one.
We have a community right here in our area, but the Deaf person who left a comment on my blog told us, they did not want a “big” deaf community and to worry about my own life instead of ” preying” on the deaf. They are exclusive and don’t want people of a different kind of deafness, or “outsiders”. They were very clear about that.
There are no other churches here in our community that are financially able to change to be inclusive for ALL deaf or deafened people. That’s why we tried to work with that particular church for these past years. This is a financially healthy church.
I reached out yet once again to the pastor of the church within the last couple of weeks, but the person from his office that handled my email said there are no resources. This multi-million dollar church is starting a Spanish outreach this year, they said.
So, that is that.
I am working with several people to bring captions to a church in another area, but we will not attend because they are simply too far away. I’m thrilled they are doing this for their congregation and I think they will grow and have many more members because of it. That excites me for those who will be benefitting from their compassion and willingness to provide the accommodation that works for them as they recognize the DISABLED deafened who are educating them regarding the ADA guidelines to meet their need for access to their English language via captioned services. Did you know 20% of new hearing aids are being purchased for our young returning soldiers who have become deafened from the war? English is their first language, and their families are all “hearing”. They have no support system or a place to go for church that accommodates their deafness. They would benefit from captions.
Check out Amazon.com and get your copy of the just published by author and teacher Michelle Jay “Don’t Just Sign – Communicate! A student’s guide to the Deaf Experience”. Many other Deaf, Hard of hearing AND the host of this blog, Charlie Swinbourne, besides myself have collaborated together and wrote about our experiences. There are links to websites and blogs that we share to help ASL students understand there are many kinds of different deaf people in the world, and Sign Language isn’t the only necessary accommodation available today. It’s a whole new world, and time to step up and make a better tomorrow for all of us.
It’s time, don’t you think, as we mentioned in our just published book, to #StopHearingLossBullying
Peace to you,
Joyce