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Advocacy Hard of Hearing Hearing Loss Self Advocacy

Proactive with Hearing Loss

Do you manage your hearing loss (proactive) ? Or does it manage your life (reactive)?

Many people with hearing loss tend to be passive which leads to isolation. We miss out on opportunities and it interrupts our relationships. When we lean too heavily on others to hear for us, we lose ourselves. We end up reactive. Today, we take a look at being proactive with hearing loss.

Manage your hearing loss so you find yourself again.

Michele: Many Hard of Hearing people are constantly on high alert, waiting to react when their hearing or devices fail them. Hypervigilance is part of what makes hearing loss so exhausting, but there’s a better way; choosing to be proactive.

I look at being proactive as taking charge; actively deciding not to wait to react. These are the steps I used to do that:

  • Educated myself about my hearing loss and the tools, technology, techniques and accommodations that would help me communicate better.
  • Defined my needs through experimentation.
  • Developed effective ways to tell others what they need to know about my hearing loss and communication needs.
  • Practiced to find what works best in each situation.
  • Embraced flexibility: When one thing didn’t work, I tried something else.

The shift in energy, from being on high alert to being proactive, really does improve your life and takes the anxiety out of functioning in a world not made for people with hearing loss. By choosing to act first, you’re in control of the way things will go.

An Example

At the start of the pandemic, I had someone contact me to ask how I would have handled going to a new restaurant where you order at the counter:

Problem: The cashier taking orders was behind plexiglass and was wearing a thick black mask. I wasn’t sure how to order, but knew I wouldn’t hear anything, so I asked for a printed menu to point to what I wanted, but they didn’t have one. I gave the combo number I wanted and the cashier kept asking me questions which forced me to tell them I couldn’t hear. They were trying to be accommodating and were kind, but I don’t even know how to help myself; I was having so much trouble trying to understand I almost burst into tears and wanted to leave.

My advice: Actively practice being proactive.

Solution: I always carry a pen and paper with me, and I premise things by speaking first and telling people behind counters that I’m not going to hear them with a mask because I lipread. So if they have a question I’m going to need them to write to me. 

I also often use Otter and AVA (automatic speech recognition apps) on my phone and I enable apps before I get to the counter to order or check out.

Michele, phone out ready to use ASR as needed.

The next time you find yourself in a similar situation, say what’s true upfront (what you just told me), “I am new to this restaurant and have no idea how to order. However, I’m not going to hear you with masks, because I’m a lipreader (have hearing loss, am hard of hearing, etc.), so I’m going to need you to write to me.”

Go back to this same restaurant and practice until you are comfortable. Set it up and leave nothing to chance.

Yes, that’s what being proactive means. Taking charge and leaving as little as possible to chance.

Chelle: You’ve heard it as self-advocacy…that sounds like too much work and it reminds us of changing laws. We’ve also called it being assertive. Assertive often shows up side by side with ‘aggressive’ so I think assertive gets a bad rap. That’s why I settled on ‘proactive’ recently. It has a nice ring to it. We can be proactive with our hearing loss.

Reactive

Reactive is the opposite of proactive. When we are reactive we get flustered, upset and isolated. Here are some of my past reactive situations.

  • Went to a banquet dinner and sat in the back with my husband and his friends. Couldn’t understand anyone so went to hide in another room.
  • Faked my way through many conversations because the speaker turned away, it was too noisy or I couldn’t lipread them.
  • Stayed home instead of going out. It was too hard to socialize, especially in groups. 
  • Sit wherever the host puts me in a restaurant. 
Proactive

When we are proactive, we are managing situations as they come. 

  • Here’s a proactive statement I use when meeting new people or talking to strangers such as grocery store clerks: “I hear enough to know you are talking but unless you are facing me, I won’t understand you. I use some lipreading.”
  • I’m proactive in attending captioned plays showing support for the wonderful accommodation that keeps me, and others, participating in public. I also try to support any hearing loss related event because not enough people show up.
  • I’m proactive in restaurants, asking for booths or going to quieter areas so I’m not struggling as much to hear conversation. I’m looking at lighting too. I’ll ask to switch seats with people if they are backlit making it harder to lipread. 
  • When going into public venues, I’ll ask about assistive listening devices. If there are issues, I’ll let them know so the next person who comes in won’t have the same issue.
  • Some events I’ll show up early to get my preferred seating. I’ll also let the person doing the talking know what I need for better communication. I’ve taped FM systems (click here to learn more about FM systems) to microphones to help me hear better.
  • Sometimes, it’s been leaving meetings or events when there are no accommodations. 
Chelle, proactive about hearing on a train tour recently. See our social media for more on this.

Those are some of the ways I manage my hearing loss. Life got a lot easier when I started managing my communication. So many people don’t know how to talk to us. When I help them help me, it also helps those who come after me.

Hearing Partners

Julia: Hearing partners can be more proactive by being involved.  Learn your partner’s hearing loss truth. Learn how you can support them so that the changes have positive outcomes. Because I guarantee you, hearing loss affects both parties. 

Don’t take over, don’t be their hearing human. Don’t decide what they can and can’t do with the hearing loss. Why? If this is not already in your family dynamics, you will be angry and resentful. If this is your family dynamics you will be even more angry and resentful. Ignorance is not bliss. You have got to work together. When you have knowledge as the hearing partner it will save heartache and hurtful words.

Medical Settings?

You can be proactive by learning when it might be an appropriate time to help interpret a conversation. Do not have the conversation for them. Only help when clarity is needed.  FYI, medical setting and interpreting should be a hard fast NO. I know there may be exceptions to my saying that, but short of an emergency room visit don’t, just don’t. Instead, help them advocate for captions so they can actively participate in their care as appropriate.

You can be proactive by asking businesses and event centers to install and use ALD (assistive listening device) equipment. Keep an eye out for the ALD symbols with with them. Learn the difference between live human captions (as our friend Angie Fuoco says) and automated speech recognition and where each is helpful. Never settle. Communications may look one way for a long time and overnight be something new. Know it all and continue to educate yourself and others. Some day they may need the knowledge. 

Assistive Listening Symbol

Be proactive with your communication outcomes before hearing loss becomes a problem. Not when you are desperate and you’re pissed off about the hearing loss.

  • Stop talking from different rooms now. 
  • Start facing each other for better understanding. Learn how to gesture.
  • Use a ASR (automatic speech recognition) app for notetaking.
Don’t wait for it, learn to be proactive now.

All of this and more can be found in our Lipreading Concepts class. Together we can change the look and stigma behind hearing loss.

Podcasts Available

Watch our companion podcast on our YouTube channel with captions. You can also find us on several audio podcast platforms (BuzzSprout with a transcript, Spotify, iHeartRadio and more) by searching Hearing Loss Live.

Visit our Lipreading classes page.

If you liked this blog post, try Workplace Accommodations, Hospital Communication, and/or Communication & Boundaries.

We have a twice a month newsletter. We add tips on being proactive with hearing loss and a challenge. You can sign up for our newsletter on our events page, scroll down a bit.

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