Self Advocacy Checklist

Hearing Loss LIVE! created this self advocacy checklist because it’s so hard to know what do. What’s right, what’s polite and what goes too far? It’s amazing how far we’ll go to advocate for others, but for ourselves it somehow it feels wrong. What holds us back?

Fear is a big obstacle. Someone in our past treated us badly is often a part of it. Chelle: Someone who “loved” me took advantage of my hearing loss. (Watch this short reel on that subject.) This ex-husband wasn’t cooperative in communication so I learned to be ashamed of it. After my divorce, I was pushed out of my comfort zone (involuntarily at first) to be upfront about my hearing loss.  After several positive interactions, I found out most people were willing to help. What a surprise! This empowered me to be proactive for my communication needs. Now I help people to help me. Life became a lot easier. “We have nothing to fear but fear itself,” (FDR) proved true in my experience. 

Advocating for someone else is easy. Over the years, we’ve seen people with hearing loss be great advocates for others but when it comes to themselves…not so much. Advocating for others is considered generous and the right thing to do! It’s good to help others, that’s praised. When it’s for ourselves, it feels risky because we might come across as demanding. Or difficult. Maybe needy. If we get a “no”, it feels like a personal rejection and that feels like verdict on our worth. What if we loved ourselves as much as we love others? Loving ourselves is not selfish. It’s the very thing we need to do so we can participate in social situations like anyone else. Value yourself enough to advocate for your communication needs. If we can advocate for others, we are qualified to advocate for ourselves too.

Self advocacy doesn’t happen instantly. It’s a practice. We have to get comfortable with being uncomfortable, pushing ourselves out of the box we are in. Self advocacy works best by starting with small requests to get used to asking. It doesn’t have to be big. In fact, it shouldn’t be a BIG task in the beginning. Make small changes to build confidence. Learn from each experience by adapting and trying again. Tweak the approach until it works for your personality, your style and needs. Keep building on it. That’s when it starts to get comfortable and it takes away the selfish feeling because honestly, we are not just helping ourselves. With each experience, we provide support for all those who come after us.

Chelle: When I run into a communication obstacle, I don’t ask what’s wrong with me anymore. I’m over that. It’s not just me because communication is a two-way street. My first thought is – “How do I get around this?”  It’s puzzle and I need fit the pieces together. If there’s a way around it, I’m going to find it. That’s a dash of determination to find a strategy. Quite often, it’s educating the other person. Sometimes it might be more technology or a different strategy. I look it as a challenge and find my workaround.

Workarounds are empowering. Play with some of the suggestions below.

Experiment and tweak it as you go so that it fits who you are.

• Find the obstacle. Don’t accept the obstacle and turn around. Find out what is making communication difficult. If you’re unsure what the obstacles are, it’s time to prioritize learning more about hearing loss and clear communication.
• Make a choice. Come up with one way to get around the obstacle. It might not be the right way the first time. It may take two or three times to find out what works. After several tries, we find what works best and can use that until we need to tweak it again. That’s the path we all follow.
• Sometimes we meltdown on the scene. We can’t think straight because emotions run high. (This too happens to all of us.) In that case, take a time out and feel your feels. You deserve that. When the emotional tide has trickled down, look at the situation and see what you can do differently next time.
• Be flexible. Try this, then try that. A compromise might be needed. Problem solve with the other person as much as possible. People are creative but don’t go without! Come to a compromise that works for you too.

• Stop bluffing. (This takes a lot of practice because it is a big habit to break.)  We aren’t being fair to communication partners by bluffing and we leave ourselves out of the loop. Bluffing creates more isolation. We get tired of saying “what” so maybe change the what. Say that again. I need a different word. I lost the topic of the conversation, what are we talking about now? We bluff because we don’t understand hearing loss. Most of us are missing specific sounds of speech and which is why we miss keywords. See our post on Sensorineural Hearing Loss Visuals to better understand how you hear. Asking for clarification is self advocacy.
• Don’t let other people make assumptions because most of the time, they will guess wrong. There are a lot of misconceptions out there. Hint: You don’t have to label yourself as hard of hearing. Tell people what you need instead. Example: “I need you to face me when talking otherwise I won’t be able to understand you.” This helps them help you.
• Stop being sorry for hearing loss. You know what we mean: “Sorry, can you repeat that?” We did not ask for hearing loss so we shouldn’t be sorry about it. Most of the time it’s not our fault we need a repeat anyway. It’s usually because they did not follow the 3 Golden Rules. For more about NOT being sorry, see Being Unapologetically Hard of Hearing. PS: You can be polite without being sorry. Swap the sorry for “please.”

Communication is a two-way street. It takes a listener and speaker working together as a team. The speaker is just as important as the listener. Because we don’t have the ability for casual conversation, communication needs to be more intentional. We can’t do our part unless they do their part. Common obstacles to communication:

• People not looking at us when talking
• People who do not enunciate
• Background noise
• Distance (hearing devices work best within six feet)

A good portion of self advocacy is educating other people on hearing loss communication needs. The more you know, the better you can guide others. Most people appreciate knowing the asiest way to communicate. 

If you are uncomfortable with educating others, or you’re not sure what to ask for, take a Beginners Lipreading Workshop. Hearing Loss LIVE! schedules one each month on Saturday.

Do you need more technology?

Hearing aids and cochlear implants are great. They help but there are gaps. Learn more about those gaps in our post, Unrealistic Expectations. You can build advocacy skills by using, and requesting, assistive technology.

• Using your hearing aid/CI app to adjust settings. Get used to telling people “Hold on a minute” as you get into the program that helps you best in particular environments. If it’s still not working, get into the app and change settings yourself. We have to power to adjust settings ourselves now.
• Hearing aid and CI companion remote mics. Get used to asking people to wear the mic in the car. Or ask to set it at the podium. Ask a lecturer to wear it (do that ahead of time, not last minute so you have time to educate).
• Public venues are required to have assistive listening AND they need to be hearing device compatible. Are you asking for them? Maybe they aren’t well maintained and you gave up. Use perserverance and resilience. If you don’t do it, who will? This builds advocacy skills too.

Remember: When you advocate for yourself, you help all those who come after you.

CART, Communication Access Real-time Translation, is fancy wording for live captioning. This is your final checklist item for self advocacy. After you’ve built up your self advocacy muscle, this is the cherry on top. Once you’ve jumped the hurdles to get CART, confidence soars.

When we cannot hear enough to participate in large settings (school, lectures, meetings, etc.) we request CART. There’s a similarity with the Deaf community requesting American Sign Language (ASL) for communication access, they request ASL interpreters. If we don’t know ASL, our access to communication is CART/captioning. This is considered effective communication under the Americans with Disabilities Act (ADA).  We have a right to effective communication. We are worthy of inclusion and participation.

Requesting CART is a challenge. CART is not common knowledge like ASL interpretation. The biggest obstacle here – people don’t know much about it. Because of that, don’t be discouraged with the first “no”. We have to educate and push for the yes, which might take several tries. If you feel discouraged, the Hard of Hearing community is the one to go to for support. Many of us have faced this and can offer advice to help move it to the “yes”. Hearing Loss LIVE! is operated by a CART provider, Julia and someone who learned to educate others to get the yes. Use our contact page.

Don’t give up.

“I have not failed. I found 10,000 ways that didn’t work.” –  Thomas Edison. This is true of self advocacy but take heart! It’s more like 10 tries or less for us.

We teach lipreading classes. As teachers, we see people who are excellent lipreaders but they don’t know how to advocate for themselves. You can be the best lipreader but if you can’t set your stage and manage communication, lipreading isn’t going to serve you well. Hearing Loss LIVE! goes heavy on self advocacy in classes. Because we’re all a little different in our needs, we give each other space to explore and find what works per person, and we honor that. We provide a safe environment to practice self advocacy.

Hearing loss isn’t going away. The numbers keep going up. Start talking about your hearing loss and you’ll find out everyone has someone in their life with hearing loss. When you help yourself, you help someone in that person’s life. Being open about it and talking to others has a ripple effect. You’re never just helping yourself.