What Challenges Still Exist for the Deaf Community?

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What life is like for the deaf and hard of hearing (HOH) has changed significantly in the past half century. Policy changes and new technologies have provided solutions for many, and yet some hurdles have stayed the same.

The Soukup family—three generations of deaf men—have watched these changes and roadblocks unfold. When a big storm destroyed Ben Soukup Sr.’s farm in 1960, he went to banks all over town to get a loan to rebuild.

Every one of them denied his application for one simple reason: He was deaf.

His son never forgot the experience of watching his dad lose his farm and ended up dedicating his life to helping deaf individuals communicate with the world around them, a legacy carried on by his own son, Chris, nearly half a century later. Ben Soukup Jr. founded the nonprofit Communication Service for the Deaf (CSD), one of a number of nonprofits in the U.S. dedicated to empowering deaf and HOH individuals, and Chris has continued the work as the organization’s CEO.

Years after Ben Soukup Sr. lost his farm, the deaf and hard of hearing community would go on to experience some of the greatest advancements in the United States and globally. However, a great number of challenges persist.

Advancements

The Americans with Disabilities Act (ADA) helped pave the way for easier communication between the hearing and deaf or HOH individuals.

Passed in 1990, the law was a major turning point for the deaf community in the United States and sought to level the playing field for those with disabilities by requiring public and private entities like schools and telecommunication services to provide accommodations for those who are deaf or have hearing loss.

The impact was monumental. Employers were no longer allowed to discriminate against those who were deaf or HOH. Relay services allowed some to make phone calls for the very first time, no longer needing to rely on hearing friends and neighbors to call their cable company or make a doctor’s appointment. Captions appeared below the anchors during the nightly news, and schools and hospitals began providing interpretation services for those who use American Sign Language. The communication chasm between the hearing and non-hearing worlds began to narrow.

The emergence of the internet and electronic devices continued to transform the way deaf and HOH individuals communicate. As email, online messengers, texting, and smart phones become increasingly popular and accessible, speaking and hearing are no longer required to do everyday tasks like ordering takeout or disputing a bill. Video conferencing services, like Skype or Zoom, have made it significantly easier for sign language users to talk with each other or for remote interpreters to assist with conversations with hearing friends and colleagues. And social media has allowed deaf and HOH individuals to find and connect with one another more easily—helping those living in rural areas, in particular, to find community and build a support network.

Interpretation services are still needed for many situations, but those in the deaf and HOH community are able to interact with more people on their own than ever before. But while the playing field may indeed be leveling, persistent challenges remain.

Economic Challenges

With the passage of legislation like the ADA, those in the deaf community are no longer strictly relegated to the role of factory worker or hard laborer, but unemployment and underemployment still disproportionately affect them. Roughly 10 percent of U.S. working-age adults who are deaf or HOH were actively looking for work yet still unemployed in 2015, with more finding only part-time or temporary positions—and only about 37 percent were employed full time in 2015, compared to 55 percent of their hearing counterparts.

These same gaps persist in education as well. Despite mandates made by the ADA, typical schools and universities are rarely set up in a way that help deaf and HOH students thrive, and only a few deaf and HOH educational institutions exist. An estimated 31 percent of working age, hearing adults have a bachelor’s degree or higher, but only 18 percent of those who are deaf or HOH do.     

The impact of these employment and educational challenges has a ripple effect. Those in the deaf and HOH community are already at higher risk for depression and anxiety, but evidence from psychologists and sociologists indicates that inadequate employment can also be linked to a host of mental health issues, as well as chronic conditions and substance abuse. All of this can often complicate efforts to find or hold adequate employment, resulting in a vicious cycle—especially when families are unable to access or afford health care.

Health Insurance

Because the largest chunk of insured Americans get their coverage through their employers, unemployed or only part-time employed deaf and HOH adults often depend on public assistance programs like Medicaid, which vary widely by state. One in 10 U.S. deaf or HOH adults aged 21 to 64 years did not have health insurance in 2015, but that’s a national average. The percentage of insured deaf and HOH adults ranged from less than 1 percent in Hawaii to a whopping 23 percent in Alaska.

This is not to say that all underemployed deaf and HOH individuals will struggle with major health issues, but the economic and emotional hardships often associated with not being able to find sufficient work shouldn’t be dismissed. Families with deaf or HOH working-age adults make, on average, about $9,000 less per year, and an estimated 20 percent of U.S. working-age adults who are deaf or HOH live in poverty, compared to just 13 percent of their hearing counterparts.

Poverty

Poverty has its own way of impacting health. Studies show that low-income Americans with limited education are consistently less healthy than their higher educated, wealthier peers, especially for minority populations. Socioeconomic status and education levels are linked to a wide range of health outcomes—from low birth weight to diabetes.  

Because of the interconnectedness of many of these issues, overcoming them will not be a simple legislative fix. While many deaf and HOH individuals receive financial support from initiatives like the Social Security Disability and Supplemental Security Income programs, more can be done to encourage equal access to employment and education.

“Where we are still challenged is by and large in the perception of deaf people and their potential,” said Soukup in an interview with Verywell—potential for not just adequate employment, but also in gaining equal opportunities to advance in the workplace and educational programs. For CSD’s part, it is launching a venture capital fund to deaf entrepreneurs, helping companies to identify and hire deaf and HOH workers, and assisting companies like Uber to create training materials in American Sign Language. But to overcome the largest economic hurdles, the United States must also tackle the social challenges faced by those who are deaf and HOH.

Social Challenges

Hearing challenges affect all ages, races, and ethnicities, from the entire spectrum of socioeconomic and geographic backgrounds. Some people were born deaf, some lost hearing as a result of a medical condition, illness, time, or trauma. Some hear a little with the support of a cochlear implant or hearing aid. Some can’t hear anything at all. In fact, the abilities and needs of those with hearing disabilities are as diverse as the community itself.

American Sign Language (ASL)

We don’t know exactly how many people in the United States use ASL, but estimates range from 100,000 to one million. Interpreters—they are not called “translators”—help ASL users communicate with hearing individuals, and the ADA required public institutions and schools to provide ASL interpreters for those who need them. You have probably seen them at news conferences during natural disasters, for example, or even at concerts.  

ASL is not simply a gesture-based translation of English. It’s a distinct language with its own complex grammar, pronunciation, and word order rules. Just like English, expressions and messages can vary based on who is doing the interpreting. But often ASL users do not get to choose the interpreter provided or have the option to request interpreters they prefer over others—and that can impact a deaf or HOH individual’s ability to communicate or understand important information.

Even when a sign language interpreter is provided, sometimes it’s not enough. In certain situations—such as a doctor’s office, for example—a certified deaf interpreter might be needed to work alongside the ASL interpreter to ensure nuances are effectively communicated. Similarly, while many deaf individuals are also fluent in written English, writing things down might not be the best way to communicate with them—especially if sign language is their primary language—and family members who speak ASL shouldn’t be used as a substitute for certified interpreters.

Social Isolation

Nine in 10 deaf children are born to hearing parents, yet less than a third have family members who sign regularly. Some rely on their deaf or HOH loved ones to read lips, but this is remarkably difficult and frequently results in inaccurate understanding of what’s been said. It also requires the deaf or HOH person to “listen” in a way that may not be as easy for them as watching someone sign. You can imagine the emotional and psychological toll of not being able to communicate with those closest to you, let alone others at school or work. For many deaf individuals living in rural areas, they might be the only deaf person in their community or school, making it extremely challenging to build relationships.

"I remember feeling alone, even when around a lot of people, because of communication barriers,” said Soukup. “I knew that most people were not malicious and that communication barriers exist only because of limited exposure to deaf people and a lack of understanding."

In addition to social isolation, some research shows that deaf children, in particular, are more vulnerable to abuse, neglect, and sexual assault than their hearing peers—the results of which can have a lasting impact on both mental and physical health.

Public Health Challenges

In truth, very little research exists on the health needs of the deaf and HOH population. Health surveys, for example, are often conducted over the phone to the exclusion of deaf people, and most large-scale public health studies do not have ways to parse out data specifically regarding those with hearing loss or deafness.

Many deaf and HOH individuals are unaware of things that might be common knowledge to hearing individuals, such as their own family medical histories or even basic medical terminology, because they don’t have the benefit of being able to overhear relatives discussing health matters or other peripheral conversations. Interactions with medical professionals can be unsatisfying for both parties, as ASL users encounter barriers to qualified interpreters, and medical organizations face difficulties getting reimbursed for providing such services. The experience can be frustrating for all involved.  

Suggestions for Improvement

In 2011, researchers published suggestions on ways to close the gap on some of the health inequities encountered by deaf and HOH populations. They suggest we should:

  1. Improve access to health information for deaf families. This includes adding captions to all public health information with audio, like informational videos, and ensuring that emergency preparedness plans are made with the input of deaf and HOH individuals.
  2. Include more deaf and HOH people in the research process. Recruitment for public health research projects should be tailored to the deaf and HOH populations, including providing and collecting information using ASL.
  3. Collect and analyze new and existing data with deaf and HOH people in mind. This could include the simple addition of deaf-related demographic information on surveys, such as at what age hearing loss occurred.
  4. Encourage ASL users to participate in public health discussions. Community-based participatory research should actively recruit deaf or HOH individuals to provide insight into all health issues—not just those related to hearing—and interpretation services should be provided at public health conferences and events.
  5. Encourage deaf and HOH people to work in public health and health-related fields. By embarking on careers in health, deaf and HOH can then help shape training curriculum and health experiences to be more accessible to their deaf and HOH peers.
  6. Advocate for more funding for communication services. Interpretation services are essential for deaf and HOH populations interacting with the health community, but they can be expensive. Talking with policymakers about the need for and importance of funding for these services could help allow for expanded access to medical services and health-related programs.

A Word From Verywell 

Much has changed in the decades since Ben Soukup Sr. was denied a loan, but it will take a collective effort at the local, state, and national level to continue to make true progress. That being said, hearing individuals can support these efforts by doing more to seek out and build relationships with deaf and HOH people in their communities, and in doing so, help to close the social chasm between the hearing and deaf or HOH world.  

Sources: 

Barnett S, McKee M, Smith SR, Pearson TA. Deaf Sign Language Users, Health Inequities, and Public Health: Opportunity for Social Justice. Preventing Chronic Disease. 2011;8(2):A45.

Cornell University. Disability Statistics. 2015. 

HealthyPeople.gov. Data2020

National Network. What is the Americans with Disabilities Act (ADA)?

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