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Accessibility Accommodations Advocacy ASR (Automatic Speech Recognition) Captioning College Disability Resource Center Communication Access Communication Practices Education Hard of Hearing Hearing Loss Misconceptions Personal advocacy Public Advocacy Speech to Text Captions Vulnerability

Accommodations: This is Good Enough For You

Requesting appropriate accommodations can be a challenge, especially if the entity has already decided what’s good enough for you. Educating others is fairly easy, usually, once the communication need is explained. Once in a while, however, they aren’t open minded.  When they won’t go beyond their current rudimentary concept of an accommodation, it is frustrating and heartbreaking. 

For National Speech-Language-Hearing Month in May, we chose resilience as a topic. What a timely topic. Chelle was reminded how ugly the process of resilience can feel. It’s mind consuming and exhausting, but in the end worth it. When we stand up for ourselves and our rights as a human with hearing loss, we help ourselves and we help others who come after us.

Green crinkled paper background.
White font: Accommodations are a bridge.
Picture of a white bridge with two white outlines of people shaking hands in the middle. The Hearing Loss LIVE! logo is underneath, @hearinglosslive.
White font: There is diversity in hearing loss. IT's not your job to decide what is "good enough" for us if you don't walk in our shoes.
Resilience, What it Means

Chelle: The last two weeks have NOT been fun. Last December, I signed up for an online course, asking if captions were available for all videos and they assured me they were. When getting an education, I do not want to be doing a lot of educating from my end so I asked about that before buying the class. The first class was great, the second class was video after video without captions. It was a woman’s faceless voice narrating.

My hearing loss is severe and it happens to be profound in the high frequencies. That means women’s voices are hardest for me to hear, let alone understand. This is especially true when I don’t have a face to use lipreading skills with. I contacted the necessary people and asked about captions, letting them know I couldn’t do this without them. Then I reminded them I asked about this before buying the class. 

Using ASR

Three different people told me I could use Chrome’s ASR (automatic speech recognition software) in place of true captions. I said I’d try that but warned them that ASR can go wrong quite often and gave them a few examples. After 3 short videos, I thought I’d lose my mind. 

  • ASR would get behind in translating, then speed up so fast I couldn’t read it.
  • ASR also constantly changes the words in a sentence while it’s ‘hearing’ and figuring out what’s being said via context. (Kind of like hearing loss.)
  • Some words can’t be heard well due to lack of enunciation, or when words are combined with intonation to imply meaning. Example: dropping down in voice at the end of the sentence to imply emphasis or combining words with a little laugh. (Kind of like our hearing loss once again!)

While ASR has proven to be a great help to those of us with hearing loss, when the information really matters, it’s not enough. I gave them examples of what I was running into with ASR and told them I wasn’t able to retain the information when my brain is trying to make sense of where the ASR is going.

That’s when someone suggested I go through the proper channels to get accommodations. No problem, happy to do so. In the form I checked captions and transcripts. The contracted class said, “Sorry there are no transcripts or captions. Use Chrome’s ASR.” No, that’s not adequate and I shared my issues again.

Read the Summary Instead

They came back with; try a different browser and “Use the summary of information you can download from the front page of the class portal. That gives you most of the information from the videos.” A little later, they let me know they reviewed the Chrome captions and they found it good enough. 

This has to be a hearing person saying this. I know plenty of people with hearing loss who will say the same thing I did, it’s not adequate. Don’t get me wrong, I like ASR and use it in more casual settings. Since this is a class, and an important one for me, I do not want to leave the information up to chance. Nor did I feel confident that a ‘summary’ of the videos would suffice. My class was being reduced to a summary for 3 lessons.

Fighting Superficial Knowledge of Hearing Loss
Green crinkled paper background.
White font: When it's not going to work, stand firm for your rights to participate like anyone else.
Yellow font: Educate to the best of your ability.
White font: Enlist support and feedback from your HoH friendly community. 
White cursive font: Keep the scaled balanced.
Yellow image of scales; left side has a black Hearing Loss LIVE! logo and the right side has a white Hearing Loss LIVE! logo.
White font: We know, it's anything but fun. In the end, it's worth it for yourself and anyone comes after you. @hearinglosslive

No, this will not work. I explained that I represent the HoH (Hard of Hearing) community, there’s 48 million of us in America. I’m taking this class to upgrade my knowledge so I can better serve my community. What kind of cheerleader am I when I won’t stand up for the very thing I need for effective communication?

In thinking about the whole ordeal, I realized we are very much fighting superficial knowledge. Does the general public feel that ‘captioned videos’ are using web browser ASR? Do they know this is not a substitute for the real deal? Do they really think this accommodation fills the gap and is good enough? I have broken, distorted hearing but that does not make me less than!

Ableism!

Julia: We talked about ableism in March and here it is! I can’t help but wonder how many students who purchased this program were made to feel less than or received a bad grade and/or did not earn the certificate that came with the class because not all the material was not accessible? Or asked for a refund and dropped the course and went elsewhere?

Higher education needs to hold their contractors accountable for providing full access to the programs they offer. There was absolutely no reason for this program to not caption their videos other than down right laziness. This program’s hope is you just give in. Accept what you’re given while they pocket the money.

When faced with these types of situations, our resilience can look a couple different ways. One, we can dig in and fight it all the way to the end, which may include legal counsel. Two, we can get our money back and find a program that is better suited for our needs.

Do the Right Thing
Green crinkled paper background.
White font: Maybe one thing won't work out exactly. Get creative and find an appropriate workaround. Do not leave the Hard of Hearing person feeling like have to accept less than everyone else.
Image: White arch with the Hearing Loss LIVE! logo in the middle. Underneath is a fat zero under the left starting point of the arch. there's 2 dots then a fat X, two more dots and fat checkmark. The arch goes from the zero to the checkmark.
@hearinglosslive

If you are an educator, don’t leave people out. If your course offers video classes and you don’t have time to caption them properly, offer an alternative to videos. Meet with them in a video meet. (Be sure to follow the 3 Golden Rules and have good lighting on your face in the video meeting.) Take time to email and make them feel welcome. Don’t just say it’s in the summary because at that point, you’re cheating them of the class material everyone else gets.  

We highly recommend captioning all videos. There’s different ways to go about this: Use Otter.ai for a basic transcript, that’s what Hearing Loss LIVE! uses. Rev also works. Upload the transcript to the video and take the time to correct the captions. ASR comes up with some off the wall things at times, like we’ve seen cuss words go in and more.  

Captions not only help people who are deaf and hard of hearing, they also help people with auditory processing disorder, English as a second language, ADHD, autism and more. You help a whole group of people when you have captions. Be inclusive.

Learn More!
  • Read our Personal Bill of Rights for the Hard of Hearing when you feel yourself wavering.
  • Title II of the Americans with Disabilities Act (ADA): “The ADA is meant to ensure that people with disabilities can fully participate in all aspects of civil life.” Title II applies to state/local programs. 
  • US Department of Education on Auxiliary Aids and Services for Post Secondary Students with Disabilities (website); higher education’s obligation.
  • Another resource from our friend Terri with the HLAA-Boulder Chapter. It also lists ways to get video content captioned.
Categories
Accommodations Community Members Connections Education Hard of Hearing Hearing Loss Sensory Loss Tribe Vocational Rehabilitation Services

The New Norm with Hearing Loss

This new norm with hearing loss can and often leads to an identity crisis. Who am I now that I have a hearing loss? What happened to all my skills? Will I ever be the same? How do I find a path back to my level of skills prior to hearing loss? Can I even do that? 

What happens if one person didn’t understand the communication error? A whole cadre of mis-communication can happen very quickly and errors can result in some haunting experiences. These experiences become the new norm. 

Written by Gloria Pelletier: M.S.W., L.C.S.W., L.I.S.A.C

The New Norm with Hearing Loss themed meme:
Picture: Black background with green flames along the left side. The 3 leaf logo of Hearing Loss LIVE! cupped in a flame. A picture of stairs leading up to a light with lots of vegetation on the side walls.
Green text: Rediscovering Who I am with hearing loss. 
@hearinglosslive
Moving Forward

These questions become paramount in rediscovering who I was with hearing loss. The path is NOT back but forward. What are the skills I need to communicate now with hearing loss? How do I find those skills? Am I capable of using those skills? 

All of these questions lead to – “Who am I now?” The obvious answer to most people is – I was the same person as before hearing loss. That isn’t quite true. With hearing loss I lost receptive language, now I needed new techniques to become proficient at conversations again. How do I do that?

Communication is how we project identification of self.

 How does that change the understanding of ourselves? I no longer knew who I was or even how to communicate with others. It becomes a quest for understanding of loss and the effects it has on  communication. A search for new techniques and receptive language. I became so discouraged that I was enmeshed in anxiety and depression. 

A new identity develops during this time period. An identity with hearing loss and all of the consequences of not having receptive language. (The younger the person is when hearing loss occurs; the easier the adjustment. They are still exploring their own identities. Hearing loss is who they are already, it’s incorporated into their identity.)  For those who have already established their identity, it becomes a major life crisis.

The path is not easy. 

Some try on the identity of culturally Deaf, but that doesn’t fit a person who is English based in communication. They can feel ostracized by the very community they are trying to identify with. This identity crisis becomes worse when some individuals try to learn ASL and are unable to achieve proficiency for communication. This effort to fit in is another failure which can cause more confusion.  I tried all of these strategies:

  •  Private tutoring for ASL 
  •  Deaf organizations for assistance but was told they are only for Deaf, not HOH/deaf. 
  • The audiologist – they said they did not get paid for rehabilitation so they were not able to help me. 
  • HOH agency and they did not have programs for teaching me how to live with no receptive language. 
  • Classes for ASL, even graduate level ASL classes did not give me fluency. It should be noted that fluency in a foreign language is almost always achieved in childhood, not adulthood and not with classroom education.
  • Psycho-therapy. I was sent to a specialist for the “Deaf”; not the hard of hearing.  There were many mis-cues due to my mis-understanding vocabulary.  I heard the therapist say I was missing “intrinsic learning”.  For years I thought she was inadequate to the task only to learn I heard it wrong. (She said incidental learning.) I did not check my understanding with the therapist. Of course I THOUGHT I understood. 

I lost years in my struggles to understand with missing sounds.

In the most unlikely place, I found answers.

It was my vocational rehabilitation counselor who began teaching me how to live with hearing loss. It wasn’t an easy transition.  With no structured program it was a struggle to teach me how to communicate effectively.  Three years later with hours of teaching and technology I can now communicate.

Black background green flames along the bottom of the meme. A green hand drawn heart at the top outlined twice. 
Green text: People with hearing loss have big hearts. We want to see each other succeed. Find your people. 
@hearinglosslive

Two years ago, I met Chelle Wyatt, HOH Advocate, in person thanks to a mutual friend. That’s when I learned my confusion was normal. Here was someone who was HOH and had gone through much of what I had to endure. She  learned to thrive with hearing loss. I wanted to thrive so I began the journey to reclaim my identity and my life. Next, I took the Hearing Loss LIVE! lipreading classes. On top of that, I found a therapist who was willing to learn how to communicate with someone who has hearing loss – don’t look away, don’t say hmmmmmmm, correct any miscommunication immediately and stay within 3 feet of me. (See the 3 Golden Rules for more information.)


Re-finding our true selves

Compensation skills can be learned. Communication skills are learned skills, we can learn them! Communication is just one way we identify ourselves. It might be how we are judged by society but it is NOT who we are. I knew my skills were still alive, but I could not find the pathway to connect them from brain to conversation. Receptive and expressive language are directly related. If I can’t understand the conversation, I can not express coherent  ideas. I have knowledge, but no way to connect what I know with what I can’t hear.  

The New Norm

There wasn’t a program for rehabilitation for HOH. There were no agencies to teach me how to communicate again. I found my tribe. Chelle and Julia taught me how to do “workarounds.”  They accepted me as a HOH person and taught me skills to survive.  Jack Clevenger, another HoH advocate, supported me in my clumsy attempts to communicate. (He introduced me to Chelle one day.) A priest and I spent hundreds of hours explaining concepts and strategies for communication.

Black background. Green flames along the bottom. 
Green text: Hearing loss is not who I am. It's how I communicate.
@hearingloss live
3 leaf logo in lower left corner.

My VR counselor helped me find solutions and technology to use to communicate. She fought against the dominant paradigm for  me.  Dr. Ingrid McBride, Audiologist, found solutions to my assistive technology (AT) needs and made sure the accommodations were correct for my hearing loss. She assessed my hearing loss, ordered the right hearing aids and adjusted them so I was immediately successful with them. She and I began teaching skills to HOH.

With the help of an supportive friend, I learned how to be by myself at night with hearing loss. He kept me company the first few nights and helped settle my fears ensuring me I was safe with current technology. (Video calls are great for people with hearing loss.) Chelle, Julia, my vocational rehabilitation counselor, audiologist and friends, I learned to communicate again. With new strategies and technology, I was able to access my knowledge and use it.

Chelle and I just gave a workshop to NASW-AZ, a major achievement for me! I went from no receptive language, depressed, isolated, and no identity to being able to interact with an audience of many people.  

We can be who we  are – sometimes it just takes a village!

You won’t want to miss Hearing Loss LIVE!’s upcoming podcast with Gloria Pelletier. In this podcast, we discuss how it happens and how to proceed through this kind of identity crisis. It comes out April 11th on our YouTube channel and other podcast streaming platforms. It’s available for free for one week, then we mark it private for our Workbook Packages. You can find transcripts on our BuzzSprout site.

Categories
Education Hard of Hearing Hearing Aids Hearing Loss Sensory Loss Tinnitus

Tinnitus Awareness Week 2024

It’s Tinnitus Awareness Week, February 5th through the 11th. Are you aware of your tinnitus this week? I am! Any time someone says the word “tinnitus”, or I read it, I become AWARE of all the noise in my head. I bet you do too. 

Written by Chelle

How much it impacts us depends on where we are on the journey. It also depends on how quiet the room is and how stressed out we might be. Sometimes it’s the food we eat (caffeine, salt and – heavens forbid – chocolate), the meds we take or how tired we might be. For some people, loud noises create spike tinnitus. Tinnitus is as individual as audiograms. We are all a little bit different but we experience some sort of sound.

Green static background.
A red frequency line.
Tinnitus
Pronounced 
tin-it-us AND Tin-nigh-tus
Either way works.
Made for tinnitus awareness week 2024
Categories
Accessibility Advocacy Captioning CART (live captioning) Communication Access Connections Education Hard of Hearing Hearing Loss Self Advocacy

Happy Anniversary!

Chelle: This is Hearing Loss LIVE!’s 40th podcast and it’s our first anniversary. ! It’s been fun creating podcasts and seeing where they go. We’ve highlighted hearing loss and its related issues and strategies; spotlighted community members for inspiration, and will continue to do so.

I love the connections we’ve made. 

Categories
College Disability Resource Center Communication Access Education Hard of Hearing Hearing Loss Self Advocacy Vocational Rehabilitation Services

Hearing Loss at College

Are you going back to college this fall? Do you have hearing loss? Here’s how to get accommodations and services.

Many students new to the college experience may or may not know what is available to them with respect to their hearing loss and equal access accommodations. Every state has different rules and regulations that govern their state colleges. And private colleges are regulated differently than state regulated colleges. This is your first opportunity to learn about how to request services that will allow you to have the same college experience as those around you. If a note taker worked for you in High School with 30 students, will it work in a lecture hall built for 100? Make sure you work closely with your college advisor who can get you connected with your College Disability Services. College is the time to learn how to be proactive in your hearing loss truth. 

How Are Accommodation Requests Handled?

Julia: College is scary right? Whether you are just out of high school or returning as an adult. Maybe you had an IEP or 504 Plan through High School to help with accommodations. Maybe your hearing loss is new and you are returning to obtain a degree. 

I can share my experience as a captioner. Being very clear; every state and every college has different disability service departments and regulations for those departments are different in each state. I have only had a short experience with private colleges, a very positive experience I will say. Some of my contracts I work directly with the disability resource centers (DRC), which is one of many names and acronyms used by colleges. Some of my contracts I work with through a third party, a liaison for the college resource center supplying interpreting and CART services. 

Most colleges have many different options with regards to hearing loss accommodations. In fact, I think it’s easier to get the correct accommodations in a college setting than it can be in an employment setting. I have captioned for students who use ASL for some classes but need captioning for others. Or they need both ASL and captions for each class. I worked with students who I captioned for but they also needed a notetaker. I have had a student who preferred a Typewell writer over a verbatim CART/Captioner (like me) and I’ve had a student who preferred a verbatim captioner over a Typewell writer. Some students get by just fine being in the front row or with a FM system or Loop in most of their classes, but need CART when English is a second language for the instructor.  

Explore Accommodations

Look at college as the sounding board for you to get to know your hearing loss truth. This is the time to use as many accommodations as possible. Learn how to work with that one instructor who is not happy to accommodate you (yes this still happens). Educate your peers on hearing loss. This is knowledge to take with you into the workforce. Whatever degree you seek, when you’re proactive with your hearing loss, you empower yourself and educate others.

Michele: University of Minnesota’s Disability Resource Center has its own Interpreting and Captioning Unit (ICU) that fills all University-related requests. I have requested CART for university lectures I’ve attended and it is arranged through the ICU.

I also participated in a Sensory Loss Symposium at the Weisman Art Museum, organized by a U of MN artist in residence and the university’s CATSS | Center for Applied & Translational Sensory Science. Accessibility for the talk back afterwards was arranged by the ICU. I’m not sure how many colleges have their own ICU, but all should, in my opinion. 

Resources for More Information

For better understanding of Higher Education and the ADA, the ADA National Network has provided An ADA Knowledge Translation Center Research Brief. It was developed by the Department of Disability and Human Development of the University of Illinois at Chicago and the ADA Knowledge Translation Center. Estimates show that 19% of undergraduate students and 12% of graduate students have disabilities. Transitioning from high school to college can be a barrier for students with disabilities, as the responsibility to seek out services and accommodations shifts onto students themselves at the college/university level. It can be a challenge for students to connect with the appropriate campus resources, especially for those who are new to self advocacy. I found this podcast that discusses a lot of the issues in transitioning to the college experience:

Hear Me Out | Let’s Support Deaf Students Transition to College with Annie Tulkin from Accessible College 

Be Persistent

In my peer support volunteer experience, I have encountered young people attending college who have no idea what accommodations are available to them. I always tell them about CART and send them my search results for information and resources in their area and for their college/university. I also encourage them to be persistent, as sometimes they are offered an accommodation that isn’t a good fit for them, and being a new experience, they may not know they can push for a more effective accommodation.

In my area there are no local CART providers, so the colleges and universities who use CART for the Hard of Hearing do it remotely. Remote CART is a great service in the right situation, but the students I’ve talked to complain that they can’t fully participate due to inadequate microphone set up for class discussion. You can’t participate and respond to information you have no access to, and that’s a problem that can only be solved by a broader availability of CART providers for onsite options in smaller cities and towns across the country.

Using Vocational Rehabilitation and Disability Resource Center Services

Chelle: If you are going to college, I recommend that you check in with your state vocational rehabilitation (VR) program to see if you qualify for services. Using the Disability Resource Center (DRC) and Voc Rehab is a great combination helping you to be more successful at school. Be sure your counselors are Hard of Hearing knowledgeable. This makes a huge difference. If they aren’t, ask for someone else. 

Go into any appointment, both VR and the DRC, prepared with clear documentation from a doctor on your hearing loss, and any other disability. You don’t have to pick one disability, all needs should all be covered. It’s helpful if your doctor can write down specific accommodations as well. 

While the DRC can help with certain accommodations and setups, VR services may be able to help you with other things (this varies in each state along with qualification):

  • Books
  • Tuition
  • Technology such as assistive listening, automatic speech recognition programs, hearing aids and more.  
Know Your Options

Sometimes the DRC will only ask you what you need. They may have their hands tied with giving recommendations. In this case, you need to be as knowledgeable as you can about accommodations. Watch our companion podcast (link below) to learn about more options for hearing loss in a classroom setting. 

Sometimes, you might be denied at either VR or the DRC. Get the denial in writing and appeal it. Don’t give up and don’t get mad, you don’t want to alienate them. Use your polite, but firm, ‘mom’ voice. (Sometimes we advocate for others better than we do ourselves. We deserve equal access too.) Take the next step up. Ask for a supervisor and/or request another counselor. 

When I took college classes in the 90’s, I was upfront about my hearing loss with each teacher. I went to the first class early and explained my hearing loss, what I could and couldn’t do. This helped tremendously. See if you can’t make an appointment with your teachers before classes start to get a feel for them. If you can, get in touch with other students who have a hearing loss to get the lay of the land too.

In Conclusion…

Feel free to contact us anytime through our website to ask us questions about accommodations or taking that next step. We are happy to help. You can also join us live at our Talk About It Tuesday, the first Tuesday of every month at 6:00 PM MST. This is an open discussion event, free with CART/live captioning. (Our next one is Sept 6th, register here.) 

Watch our podcast for more information about college disability services.

If you like this post, check out our podcast on Parenting Kids with Hearing Loss for IEP ideas. Also take a look at Defining the Hard of Hearing. Occasionally our needs are mixed in with those of the Deaf community. Another good one to look at would be Self Advocacy.

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.