Nurturing Self-Advocacy by Learning How to Speak Up

By Rohima Badri, Ph.D.

Reuniting with family and friends was the highlight of our year in 2022, as it was for many others. This particular reunion of my parents, aunt, and uncle, who are all over age 75, was deliberately kept small and low-key as they all had unique hearing challenges. Despite choosing a non-rush hour, the restaurant we met at was already crowded and noisy, so I requested that our group be placed in a quiet corner. 

As the staff was trying to accommodate us, my family members began to feel as if they were intruding and unnecessarily creating problems for the already overworked staff. Once settled, we quickly realized that the loudspeaker playing upbeat, loud music was just above our table. When I began suggesting we relocate or, at the very least, ask whether the music could be lowered, my parents were shooting daggers at me. I explained that it was okay to speak up and ask for help, but all four unanimously and decisively agreed that we needed to get on with the dinner and not be a nuisance. In the end, it was a hurried and mostly quiet dinner, with the catching up and conversation left for another day. 

After the dining experience, I did some research and discovered that older individuals face numerous challenges in self-advocating for their disability. As self-advocates, we will speak up for ourselves and our peers, learn who supports us, where and how to access information, know our rights and responsibilities, make our own choices, and advocate for our group’s rights. 

But, often, individuals in our society are stigmatized and marginalized as a result of their age. Numerous studies suggest that self-esteem and self-determination drop dramatically with age, making this age group feel that they are a burden to society. When any handicap or impairment is added to the already fragile mindset of aging adults, a sense of self-perceived helplessness and social alienation heightens the barriers to seeking help, according to a 2019 paper in Innovations in Aging.

Caitlin Coyle, who helped develop Boston's senior civic academy that promotes self-advocacy among older adults, opines that older individuals, in particular, lack the opportunity, expertise, and education to gain access to information and assistance to improve their status. She believes that older adults struggle with self-advocacy because of other overlapping issues with aging, such as economic security, social isolation, equity, and access to information, and they even struggle to understand who to contact to meet their needs.

When Aging and Disability Intersect

Loss of hearing is a common complaint among older adults. Approximately one in three people between the ages of 65 and 74 has hearing loss, and nearly half of those older than 75 have difficulty hearing. For individuals with hearing loss, one of the most common challenges is understanding speech in the presence of background noise. Commonly known as the "cocktail party effect," background noise deeply diminishes the ability to focus and discriminate speech sounds, thereby negatively affecting communication. 

Credit: @saintjaddy/Unsplash

For aesthetic and economic reasons, more and more public venues like restaurants and fitness centers have moderate to loud background music. Loud noise not only limits conversation but also causes physical discomfort like ear pain, ringing, and increased sensitivity to sounds. Studies show that such adverse consequences cause the older population to entirely avoid noisy places and miss out on a wealth of life experiences. 

The Americans with Disabilities Act (ADA) protects and prohibits discrimination against individuals with a disability. ADA Title III regulations require public accommodations, such as restaurants, hotels, and retail stores, to be accessible to individuals with disabilities. However, in his work on the disability rights aspects of ambient noise, noise activist Daniel Fink, M.D., depicts the gap—or rather the absence—of ADA access guidelines for ambient noise in places of public accommodation. Fink likens the challenges those with hearing impairments face to curbs that pose "an access barrier for wheelchairs."

Many studies show that self-advocacy is among the most crucial proactive steps to mental and physical well-being, especially when two complex forces—aging and disability—intersect. When we are able to self-advocate, we empower ourselves and our peers, and in the process, we work toward living actively and independently as a part of our community.

How to Empower With Self-Advocacy? 

Know and Act on Our Disability 

Nearly 17 percent of the population, or 36 million Americans, are estimated to have some sort of hearing loss, but only a few seek treatment. Older adults may be unaware of or in denial about their hearing challenges or assume that hearing loss is a part of the aging process and learn to live with it.

Moreover, individuals typically wait an average of 10 years to be fitted with their first set of hearing aids after being diagnosed with hearing loss. The first step in self-advocacy is to become aware of our disability and take steps toward improving our situation. Talk about hearing challenges with a primary care physician or support group so that the initial process leading to a diagnosis and treatment for the hearing loss can begin in a timely manner.

And for those who wear hearing aids, hearing aid digital technology has revolutionized the way we hear in the presence of background noise, with specific settings on hearing aids to help reduce it. Patients with hearing loss can use this checklist (developed by a hearing aid manufacturer) as a comprehensive guide to learn and develop self-advocacy skills related to personal and medical health, hearing and other assistive technology use, accommodations, and consumer awareness.

Know and Protect Your Rights 

To self-advocate for our rights, we must first understand what they are and why they exist in the first place. The ADA protects people with disabilities from discrimination and assists in making places and services accessible with reasonable accommodations so that people with disabilities have the same rights as everyone else, are treated fairly, and can live their lives to the fullest as members of the community. The government can enforce ADA rights in most public areas, including public transit, city and town halls, and libraries, but the same is not true for private places.

As a result, it's critical to defend the rights of those with different abilities, raise awareness of them, and encourage others to support them. Invoking ADA rights in court is one way to enforce them. However, while the process leads to change, it may be costly and time consuming. Most people are either intimidated or unclear about ADA rights. A more collaborative and interactive approach in terms of what the ADA entails, why it was created, and how it helps and safeguards individuals with disabilities can inspire others to defend these rights.

We can consider joining an online or in-person support group; use social media platforms to make our voices heard; attend town hall meetings; write letters to representatives in Congress; and work with organizations that promote the rights of people with different abilities.

Here’s where technology can help again. Apps like SoundPrint are designed for any individual to measure sounds in public places like restaurants and fitness centers and submit them to a large and common database that, in turn, can help anyone looking for a quieter experience.

Such apps are not only valuable in promoting hearing health awareness but are also powerful tools in unifying a large number of voices for the same cause. SoundPrint shares the anonymized data with many organizations, professionals, and even the media, and most importantly, notifies the respective venues about the loud noise complaints and what the venue patrons’ desire.

Practice the “Dignity of Risk” 

The dignity of risk refers to the right of the individual to take reasonable risks and make an informed choice to engage in, learn from, and grow from their life’s meaningful experiences. Simply put, we should not just avoid situations that challenge a disability.

Give the neighborhood dining place a visit even if it known to be too loud. We can speak to the staff, explain our challenges, and recommend they turn down the volume of their music system, even a little. It’s quite possible other diners and even the staff will welcome the decreased sound. In this way, it shows that those with different abilities do not have to limit their choices due to their challenges and can live life to the fullest.

In a nutshell, we are ready to self-advocate if we can: 

• Understand hearing loss, its prevention, and intervention strategies

• Manage and troubleshoot hearing assistive devices

• Know how to access support services (hearing health professionals, etc.)

• Explain the disability and the challenges arising from it to others

• Seek and advocate for accommodations

• Understand our rights, and protect and be vocal about them

• Participate in all life experiences, fully understanding that they may not always be positive but are essential to learning and improving your situation

Here are some resources that may help build self-advocacy skills: 

• The World Health Organization: Hearing Care Advocacy

• American Academy of Audiology: Guide to Adult Hearing Care 

• National Resource Center for Self-Advocacy 

• Self-Advocacy Groups By State

Rohima Badri, Ph.D., lives in New Jersey. She is a hearing healthcare adviser for HHF’s Keep Listening prevention campaign.

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