Advocacy: Lessons Learned

My friend and HLAA colleague Ruth Bernstein gave me permission to repost this excellent essay.

Posted by Ruth Bernstein on May 5, 2017

Sound Advice by Ruth D. Bernstein

I have a history as an advocate for people with hearing loss which goes back many years. In the process of advocating, I’ve learned many lessons, a few of which I want to share with you in recognition of Better Hearing and Speech Month.

Lesson One – Coping with hearing loss is a 24/7/365 business. It is an integral part of life. I’ve chosen to make advocacy one of the priorities in my life because I have been very lucky and had constructive, compassionate help from the professionals I’ve dealt with. I want to return that help and compassion to others. I also discovered along the way, I’m a bit of a ham and like sharing my ideas with an audience.

Lesson Two – Asking for what we need in detail, in writing and in advance is useful, e.g. asking for CART, an assistive listening system, a seat that gives a good view of the speakers or stage, a hotel room that is wired with alerting devices. These requests allow us to participate in activities we might not have been able to enjoy otherwise. They also encourage people with hearing loss who don’t know about these accommodations to learn about them.

Lesson Three – Explaining why we need accommodations educates the people we deal with. It puts a human face on the problems people with hearing loss encounter. I’m always pleased to hear “Thank you. I learned a lot from you.” Sharing resources and making referrals to your network can be helpful in solving a particular situation.

Lesson Four – Having a sense of humor is a big asset in dealing with the frustrations of hearing loss. At a job interview, the batteries in my hearing aids went dead. Very calmly, I looked at the interviewer and said, “The number you have reached is temporarily disconnected. I have to change the batteries in my hearing aids.” The look of astonishment on her face was wonderful. I had not told her I had a hearing loss when I went into the interview! My other favorite line is “Don’t speak until you can see the whites of my eyes.” It is much more effective than saying “Please face me when you speak.”

Lesson Five – Saying “please” and “thank you” are invaluable tools in smoothing the way to requests that, for one reason or another, may be difficult to fulfill. Everyone wants to be treated with respect and appreciates having their efforts recognized.

Lesson Six – Look for win-win solutions to accessibility problems. You get the accommodation. The supplier gets more business, good PR and a grateful citizenry.

Lesson Seven – Getting angry accomplishes nothing!

Lesson Eight – Join organizations like the Hearing Loss Association of America (HLAA) so you can meet others who are dealing with the same problems you are – you are not alone! – and learn as much as you can about your hearing loss, hearing aids, cochlear implants, assistive devices and helpful coping techniques. CHC also has support groups for people with hearing loss.

Learn more about CHC’s support groups »

Lesson Nine – Hearing loss is not a fatal disease. It is frustrating, annoying and difficult to cope with. Although recent research shows untreated hearing loss can affect your physical and mental health and your memory, there are a growing number of ways to address hearing loss through technology and counseling. Take advantage of them by coming to CHC and joining HLAA-NYC.

Become an HLAA-NYC Chapter Member »

Get your hearing checked at CHC »

Lesson Ten – Hearing loss is an invisible disability. Each time we speak up, we make it more visible! Become an Ambassador for Hearing, explaining what we need, why we need it, how important it is to each of us and how grateful we are for the services we receive, even if they aren’t perfect. Participating in community activities is also helpful. Please join CHC and HLAA-NYC at the New York City Disability Pride Day Parade on Sunday, July 9, 2017.

Learn more about NYC’s Disability Pride Parade »

– See more at: http://chchearing.org/blog/hearing-loss-advocacy-lessons/#sthash.iTwE6BSb.dpuf

3 thoughts on “Advocacy: Lessons Learned

  1. Lesson Eleven –

    Know the ADA law! (including the 2010 revision of what EFFECTIVE COMMUNICATION is and what that means for a given individual). Know procedures for what to do when a violation occurs, or to prevent a violation by letting vendors, organizations be aware of the law. (You be surprised how many people are unaware of ADA laws -both the person with the hearing loss and event organizers, vendors etc.)

    As the old saying goes –the best customers are educated ones!

    Like

  2. Thank you, Katherine! I’m finally back on line on my computer. I suggest you write up Toni’s medical CAP form, too. I’m sure a lot of people would appreciate that. See Margaret Wallhagen’s article on page 10 of the current HLAA Magazine.

    Ruth >

    Like

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