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Hearing Loss LIVE! Attends the SayWhatClub Convention

Let me give you a taste of a hearing loss convention. Julia and I went to the SayWhatClub (SWC) convention August 10th-13th in Nashville, Tennessee. We believe everyone should go to at least one hearing loss convention. You get to experience Hard of Hearing culture. What does that mean? 

Hard of Hearing Accommodations

You have the accommodation you need to understand everything that is said. They put in temporary hearing loops for those with telecoils in their hearing aids. (*Ask your audiologist to turn on the telecoil program before you go. Make sure it’s a dedicated telecoil program. About 70% of hearing aids have a telecoil.)  If you don’t have telecoils, it’s okay because there’s also a human providing live captioning as we go. (Called CART, Communication Access Real-time Translation.) Our human providing captions was Julia, who also sponsored some time through her CART business.

I helped to lay the hearing loop.

At conventions, you make connections with people. People who are more experienced and can answer all kinds of questions. If they don’t know, they know someone who can. Because most of the attendees are Hard of Hearing, we know how to talk to each other and people are patient with repeats. Knowing what it feels like being left out, they are usually careful to make sure everyone is included. 

Day 1

Conventions start with a welcome party. This is where you find old friends and make new friends. The SayWhatClub has a theme at their welcome party, this year they told everyone to wear a music t-shirt.  Somehow I missed the memo. Thankfully another attendee brought extra t-shirts and let me borrow one for the evening. 

I had a lot of fun with that shirt!

When the welcome party ends, we spread out to either the hotel bar or take on the city. Come on, we’re in Nashville so let’s explore! We found Printers Alley and a bar with a live band. It was loud but the group I was with knew some form of sign language and we lipread too so we got by. We all help each other with signs as needed. 

Day 2

We started the workshops. At the SWC con, give the first workshop to sponsors. Each sponsor had about 10 minutes to speak. Vendors help fund the conventions we love. They bring us knowledge and technology. Some are Hard of Hearing themselves. Here’s the sponsors this year:

  • T-Mobile Accessibility & Wireless who sponsored the welcome party. InnoCaption who sponsored the hearing loop.
  • InnoCaption has sponsored many SWC cons, they are a regular.
  • We have also had Mitchell Levy of Hamilton CapTel sponsoring and attending SWC cons for many years.
  • Advanced Bionics came and talked to use about their cochlear implants and the Roger Technology.
  • CaptionCall is another sponsor.
  • Yours truly was sponsor as well, Hearing Loss LIVE! and we talked about our Lipreading Concepts classes coming up. Vanderbilt University Brain Development Lab – They are studying how D/HoH children learn. Here is their project.
  • We also had Listen Technologies as a silver sponsor and Cochlear though neither could  show. Thank you vendors for helping make this convention possible!

Hearing Loss and Mental Health

The next workshop was Robin Nobling with NAMI of Davidson County. Her talk was  titled: Got Stuff? “Not a single person gets through life without a period of anxiety, depression, fear, grief, anger.” Those of us with hearing go through all those emotions well. She encouraged us to unpack our ‘stuff’ and move toward acceptance. What I got from it was that we should talk about it and connect with peers. 

Our last workshop of the day was with Cynthia Moynihan, a hearing loss advocate for 30 years who gave us Hearing Loss Empower Hour.  She shared some of her challenges from over the years with us. “Why me,” she used to ask. “Because I have the opportunity to learn and give back.” She finds a word to focus on each year, this year’s word is “opportunity”.  She’s found plenty of opportunity. She warned us against fitting into a mold, accept and embrace our uniqueness. 

The SayWhatClub also has daily, accommodated activities. That night we all met at the Wildhorse Saloon to learn line dancing with captions and sign language! Captions thanks to Julia and the ASL interpreter was provided by Bridges for the Deaf and Hard of Hearing.

Are you tired yet? I was but it’s worth it.  I love hanging out with my tribe. 

Day 3 Friday, August 12th

Friday’s first workshop was with Nancy Denning-Martin & Mike Helms of Bridges for the Deaf and Hard of Hearing. It was titled Advocating for Big Change. For those of us passionate about advocacy, this was informative! Nancy and Mike talked about creating change on the “micro level” which is family, friends and people you meet day to day. There is also the “meso” level of advocating which is things like churches, schools and other groups. Last, there is the “macro” level which affects change on a larger scale; politics, legislation, policy. Samples were given of each category.

The second workshop was:Jourdan Holder AuD, the director of the Cochlear Implant Program at Vanderbilt University. She gave us: Hearing Devices, An Update on Technology, Candidacy and Outcomes. She gave us a lot of information about cochlear implants. They are working on shortening the electrodes to have a better chance at leaving the remaining hearing. This is going through the FDA process of approval. 

Our last workshop was with Peter Hodes, Introduction to Tai Chi: Movement for Health, Balance and Relaxation. He led us through a series of tai chi movements, showing us how to breathe through them. He encouraged people to do what they could and no more. Pain isn’t the answer here. Use a chair or a table as needed. He made us laugh a lot. For many of us, wit was the first time trying tai chi. 

The afternoon activities were a tour of the Grand Ol’ Opry backstage, Madame Tussauds Wax Museum and then attending the night’s show at the Grand Ol’ Opry. 

Day 4, Saturday August 13th

Our last day is dedicated to afternoon activities in the downtown area of Nashville. They went to the Country Music Hall of Fame to attend the Songwriters Sessions Bonus and tour the Museum there. 

It’s banquet night! The banquet was sponsored this year by Safe N Clear. Safe N Clear gave away a box of masks with a window, one box to each table. They also provided each guest with a mask to use. 

Keynote Speaker

Our keynote speaker was Meaghan Thomas, a broadcast meteorologist in Nashville who created  The Heart of Hearing Foundation.

Her dad had a hearing loss while she was growing up so hearing loss was no big thing.  Her own hearing loss was undetected for many years because they thought, “she just wants to be like dad.” In a high school physics class, they were working with different frequencies and that’s when her hearing loss came to light. Still she considered it normal and blew it off. It wasn’t until college that hearing loss became hard to blow off. She didn’t know about accommodations so she “scooted by”. In grad school she was more upfront about her hearing loss and they let her record classes. 

As a meteorologist/tv host, she had to get an ear piece. She was fitted for that at a hearing aid place. That was her first real hearing test. Up to that point, her coworkers thought she was unfriendly because she didn’t always answer them. One confronted her about it and that’s when Meaghan let her know she was deaf on one side and had a hearing loss on the other side. That helped clear the air and that coworker became one of her champions. 

Hearing Aids

Along the way she was able to get her parents to buy a hearing aid. That was all they could afford. She was amazed at how much she could hear and what things made noise. However, it was too unbalanced having only one so it got put away. 

Three years later she was told about the state vocational rehabilitation program by a new audiologist. The VR program was willing to pay half of the hearing aids and she wanted them so much she was willing to go in debt to pay the other half. When she went in, they gifted the other half to her because they knew she would go on to do good things. She said she sat there and cried.

Last year she came out about her hearing loss publicly posting a picture of her holding her hearing aids out. The next day she woke up to a thousand comments, receiving encouragement. Many parents of kids wrote in to say it helped their kids know they do whatever they wanted. She appeared on Good Morning America with this story. Shortly thereafter she wrote a children’s book based on the comments. Once she made her money back from the book, 100% of the funds goes to the foundation she created.

The Heart of Hearing 

The Heart of Hearing Foundation was created to help others in need of hearing aids. Right now it helps people within in the Nashville area but she’d like to go nationwide and help many others.  Her main goal is to help the working age people, 20-45, to get hearing aids. These people need hearing aids to keep working. 

“When you finally become okay with who you are, you don’t realize how many people you are going to bless.” A lot of heads here nodding at the convention. Hiding hearing loss is a lot of work. When we become more about about it, and what we need to communicate, the easier it gets. We touch many lives and we can make a positive impact. 

Grow your connections. Attend a hearing loss convention.  

Julia and are looking forward to attending the Association of Late-Deafened Adults (ALDA) October 19th-23rd in San Diego, CA. This too is a fun convention with lots of great people and information. ALDA is famous within the Hard of Hearing community for their Karaoke Night. Let’s sing our hearts out because we can’t hear anyway! Just have fun. 

Join our September 6th Talk About It Tuesday at 6:00 PM MST to learn more about either convention.  

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

College Disability Services

Fall is upon us and it is back to school we go. 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 notetaker 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.