Need for advocating now for hearing loss

Posted by arrowshooter @arrowshooter, Aug 19 11:06am

We need to advocate for ourselves NOW.

I am an advocate for hearing loops and I just communicated with my local bank about assistive systems for people with hearing loss. The bank officer was polite and listened but was generally uninterested because THEY HAVE NOT HAD ANY COMPLAINTS. This little bank has about 10 locations and no one has complained about using the drive-up windows with the speaker systems that are very difficult to understand especially if there are other cars running and traffic going by. We talked about counter-top loop systems to use in the lobby and he said no one has ever complained about not being able to hear.

During this COVID pandemic we are experiencing more situations that make it more difficult to communicate (masks, plastic shields, speaker systems, etc). People assume their systems are OK as long as no one ever complains. Asking for some to repeat or speak louder/slower is not a complaint. It is just accepted practice. As people with hearing loss we expect to have trouble communicating so that trouble becomes common practice to us. We deal with it or around it.

Of course there is a danger that if we complain now our complaints will be dismissed as “caused by masks or plastic shields”. Those things only make a bad situation worse for us. We have to dispel the common notion that hearing aids restore everyone to normal hearing.

As I write this post I think of the explosive thread on this forum about the medical professions reluctance to accommodate people with hearing loss. The medical care people are only one group who ignores people with hearing loss. But the disregard of people with hearing loss is universal.

Maybe we are the ones at fault.

THIS SAYS IT ALL….OR AT LEAST MOST OF IT! Yes, I was 'shouting' with those CAPS.

Hard of hearing people have two big problems that are chronic:

1. As a group, hard of hearing people don't know what can help them beyond hearing aids which are considered by society to be a 'solution'. We, who use hearing aids know they are aids. They help, but do not resolve the problem. The 'solution is far more complex. Finding solutions means taking control, educating oneself, and not being led by advertising that markets denial and promises far more than products can provide.

2. They don't realize that change that comes through education & advocacy begins at the grass roots level. In order to solve a problem, the people who are affected by it must become involved in finding a solution.

As long as most of our collective energy is spent denying we have hearing loss and/or hiding it because we're embarrassed by it, progress in effecting change will be difficult and long. We have to get off our butts and speak up. We have to tell people what we need. First, we must know what we need.

Liked by rosemh

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@julieo4

THIS SAYS IT ALL….OR AT LEAST MOST OF IT! Yes, I was 'shouting' with those CAPS.

Hard of hearing people have two big problems that are chronic:

1. As a group, hard of hearing people don't know what can help them beyond hearing aids which are considered by society to be a 'solution'. We, who use hearing aids know they are aids. They help, but do not resolve the problem. The 'solution is far more complex. Finding solutions means taking control, educating oneself, and not being led by advertising that markets denial and promises far more than products can provide.

2. They don't realize that change that comes through education & advocacy begins at the grass roots level. In order to solve a problem, the people who are affected by it must become involved in finding a solution.

As long as most of our collective energy is spent denying we have hearing loss and/or hiding it because we're embarrassed by it, progress in effecting change will be difficult and long. We have to get off our butts and speak up. We have to tell people what we need. First, we must know what we need.

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Bravo Julie! Thanks for speaking out. You are lucky to have the HLAA which appears to be active. Great to see various people, possibly advocates chiming into various conversations.

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@julieo4

THIS SAYS IT ALL….OR AT LEAST MOST OF IT! Yes, I was 'shouting' with those CAPS.

Hard of hearing people have two big problems that are chronic:

1. As a group, hard of hearing people don't know what can help them beyond hearing aids which are considered by society to be a 'solution'. We, who use hearing aids know they are aids. They help, but do not resolve the problem. The 'solution is far more complex. Finding solutions means taking control, educating oneself, and not being led by advertising that markets denial and promises far more than products can provide.

2. They don't realize that change that comes through education & advocacy begins at the grass roots level. In order to solve a problem, the people who are affected by it must become involved in finding a solution.

As long as most of our collective energy is spent denying we have hearing loss and/or hiding it because we're embarrassed by it, progress in effecting change will be difficult and long. We have to get off our butts and speak up. We have to tell people what we need. First, we must know what we need.

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Your last sentence here, I think is a real kicker…about educating ourselves. I, for one, was hardly enthusiastic really, about doing this because I had enough going on in my life so that the last thing I needed was yet another project to be involved with. Someone on the list recently said something about a manual (for something specific – was it hearing aids?). Can we think of a kind of simple. somewhat entertaining, introductory manual-like piece of information to help guide people? As opposed to just "search the internet"? Actually, I think Katherine Bouton's latest book, "Living with Hearing Loss" comes pretty close. I'm sure you might have suggestions for a basic reading list?

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I am an essayist, but if I live long enough I will get a book completed. LOL I agree that Kathrine Bouton's book is excellent. Problem with compiling a manual that includes technology info, is that things change so fast it becomes obsolete. Best advise is to keep up with HLAA activities to see what's happening 'next'. HLAA does wonderful work for us, but the organization really needs support from the people it advocates for. The staff is small. They are underpaid, but loyal. Membership dues barely cover the cost of publishing the magazine that comes with membership. Membership actually represents a tiny piece of the population the organization speaks for. People don't realize how much their support means and how far it goes. This year has been tough for HLAA. Convention cancelled. Walks4Hearing minimized due to COVID19, etc. I hope people will realize the value of HLAA and be generous in providing financial support through membership dues, financial gifts, bequests, etc. We have so much work to do. http://www.hearingloss.org for validation. 🙂

Liked by tonyinmi, barbb

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I agree wholeheartedly….if you can muster a few dollars to be a member – it would be well worth it for you and the rest of us. The benefits are enormous when you think about it. You have all of us to consult as well as the organization itself. There is enough information to keep you busy in learning about the new field of hearing loss and everything associated with it. In fact the research that outlines it is going in every direction now because they have found answers to questions they have had for decades. YET, they can't go forward unless we support them in what they the researchers are doing, the upfront people at the National office are doing in interacting with our Legislators in advocating for us as well as educating us on the continuum and then all of us who are on the front lines in the trenches. We are the ones who are living in the world of hearing loss – trial/error the different ways of using the devices and working with the professionals, the manufactures and making them WORK FOR US! That is how this works. We have the funds to do that which means we have the means to make changes in how our future will go. We either stay where we or we push the needle forward and make sure we get what we need. Julie and I and others on our team advocated for change years ago and didn't rest until we had the attention of many – however, there is still so much more to do. It takes one step and a few shekels to make that happen. You will reap what you sow…as they say.

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HLAA started in the founder's basement. He and his family paid a huge price to make hearing loss an issue of concern. The founder never accepted any pay, and the organization functioned with a volunteer staff for several years. Donors made it possible for the organization to grow and be able to afford office space and a small staff after a few years. Still, they continue to operate on loyalty and a shoestring! HLAA Is rated well among charitable non profits, and continues to use every penny to help make a difference. Thankfully, bequests received from early members have helped HLAA keep going during the tough times we're in right now. All HLAA chapters and state organizations are run by volunteers. These are tough times for organizations that depend on volunteers. Many people feel that volunteerism is a dying thing. Everyone thinks that someone else 'will do it', Not so. We all must do our share and take our turn. People like Nurse Headaches/Eloise are making a difference, but they sure need help!

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People who are hard of hearing have been far too nice for far too long. We pretend we understand what people are telling us because we don’t want to hurt their feelings. We have to stop doing that. It’s not going to be fun, and I am not looking forward to breaking the news to folks who have no idea much spoken information we are not getting. Asking for accommodation or access is going to disrupt their routines and cause them distress.

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Glad you're on the bandwagon! Now, I wish I knew where everyone lived!

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Many people that I have been in contact with over the years resent me because I am and have been outspoken just for that reason. But after I have given my story of the reasons I am who I am – they understand why I do the things I do. Of course, not everyone is invited to know my story. There are some 'jerks' out there who just want to mess with us and don't want to help us and would rather now go out of their way to learn about the hearing loss world. They are the ones you move on by and work with those who are willing to collaborate with and are willing to listen and learn. It always take a step to move in the right direction. Repetition is your second name. Not everyone hears what you are saying and or they hear it but don't always connect the dots to what you are saying. Like me – they see I speak like a regular person – "how can I be hard of hearing? but when I take out my powerful hearing aid and show them my streaming Resound App on the iPhone and show them I am nearly deaf…it's another matter. It's more than just talking and asking. It is BIG matter and one that needs to be taken seriously no matter who you are and where you are located.

Liked by ltecato, Michelle

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@julieo4

Glad you're on the bandwagon! Now, I wish I knew where everyone lived!

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@julieo4 Julie, is there an unspoken or even written rule about not knowing where someone lives? Why is that information primarily not mentioned here? It definitely could be helpful at times.

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I don't think there is any rule on this, but people have the choice to not disclose more information than they wish to, It's a confidentiality thing. . It would be interesting to know which state people are from, but that is their information to disclose. How ironic it would be to have conversations with someone who lives in your own 'back yard', without knowing it. 🙂

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@barbb

Your last sentence here, I think is a real kicker…about educating ourselves. I, for one, was hardly enthusiastic really, about doing this because I had enough going on in my life so that the last thing I needed was yet another project to be involved with. Someone on the list recently said something about a manual (for something specific – was it hearing aids?). Can we think of a kind of simple. somewhat entertaining, introductory manual-like piece of information to help guide people? As opposed to just "search the internet"? Actually, I think Katherine Bouton's latest book, "Living with Hearing Loss" comes pretty close. I'm sure you might have suggestions for a basic reading list?

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Here are a couple of links that may be helpful for people seeking basic information about what is available to help with hearing loss.

https://www.hearingloss.org/hearing-help/ https://www.hearingloss.org/hearing-help/technology/hat/ "Hat" stands for hearing assistive technology.

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@julieo4

THIS SAYS IT ALL….OR AT LEAST MOST OF IT! Yes, I was 'shouting' with those CAPS.

Hard of hearing people have two big problems that are chronic:

1. As a group, hard of hearing people don't know what can help them beyond hearing aids which are considered by society to be a 'solution'. We, who use hearing aids know they are aids. They help, but do not resolve the problem. The 'solution is far more complex. Finding solutions means taking control, educating oneself, and not being led by advertising that markets denial and promises far more than products can provide.

2. They don't realize that change that comes through education & advocacy begins at the grass roots level. In order to solve a problem, the people who are affected by it must become involved in finding a solution.

As long as most of our collective energy is spent denying we have hearing loss and/or hiding it because we're embarrassed by it, progress in effecting change will be difficult and long. We have to get off our butts and speak up. We have to tell people what we need. First, we must know what we need.

Jump to this post

First of all, thank you to Mayo Connect for introducing me to this site. I just became a HLAA member. I wish there was a Milwaukee chapter. Next, I want to applaud all if you for your efforts on behalf of us with hearing loss. For the first time in along time, I feel slightly optimistic about navigating through this annoying hindrance of being able to hear but not understand what is being said.

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It definitely helps to 'talk' to others who 'get it'! Welcome to HLAA. I have good news for you. The is a Milwaukee Chapter. It's called the Metro Milwaukee Chapter. They meet at the Wauwatosa Library when regular meetings are held. There's chapter information at the HLAA Wisconsin website. http://www.hlaawi.org Wisconsin chapters are located in Milwaukee, Madison, Appleton, Door County and Platteville. Currently, Fox Valley & Madison are holding meetings via Zoom that are open to anyone who wants to attend. Let me know if that interests you. So much to learn. Feel free to send me a personal message.

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