Inequities in health and health care have increasingly become an area for concern and action for public health professionals, clinicians, policy makers, and communities. Research has documented inequities in the prevalence of chronic diseases of subpopulations defined by education, income, race and ethnicity, and English proficiency. Justice, a cornerstone of medical ethics, calls for corrective actions (
We contend that all communities contain a minority group whose health needs are understudied and underserved. This group is the sign language–using deaf population. Most sign language users have been deaf since birth or early childhood (
In this article we focus on public health with deaf sign language users. Many deaf and hard-of-hearing people do not know sign language, and they comprise populations that also experience inequities in access to health communication, health care, health research, and health-related careers. Some of our recommendations also apply to other deaf and hard-of-hearing populations, but communication needs are diverse and public health collaboration with these populations will yield additional recommendations to address inequities. We do not attempt to address all of these issues here.
It has been 20 years since the passage of the Americans with Disabilities Act of 1990, yet deaf sign language users continue to experience inequities accessing health care, health information, health research, and health-related careers, which limits their ability to achieve optimal health for themselves, their families, and their communities. The full effect of these inequities on chronic disease continues to be mostly unmeasured. Bringing about the conditions necessary for people to be healthy is a requirement of social justice (
We thank the deaf and hearing colleagues, community members, and other public health professionals who motivated us to write this essay.
The Rochester Prevention Research Center: National Center for Deaf Health Research is supported by cooperative agreement no. U48 DP001910 from the Centers for Disease Control and Prevention.
Dr Barnett is supported by grant no. K08 HS15700 from the Agency for Healthcare Research and Quality. Drs McKee and Smith are supported by grant no. T32 HL007937 from the National Heart, Lung, and Blood Institute of the National Institutes of Health.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
The videos below are an adaptation of this article featuring dialogue in American Sign Language.
Hello! Good morning. Good morning, everyone. Let’s continue our discussion about social justice from last week. Who can remind us what social justice means? Jason? It’s the concept where all the individuals and groups in a society get fair treatment and benefit equally from society. Hmm… How about a little more? Tiffany, go ahead. Social justice is more than a focus on people. It’s a focus on community, government, society, et cetera, to see what could be improved or created so everyone gets fair treatment. Good! Today, I want to discuss how health disparities exist in our society and how this relates to social justice. Yes? What does health disparities mean, specifically? Anyone? Jason? Well, it means how diseases affect different populations in unfair ways. Certain kinds of people get sick or die more often than other groups do. Diseases and other health problems don’t affect everyone equally. What kinds of things... what factors...? What factors in society might make different groups experience, different kinds of health problems? Or different severities, or consequences of different health problems? Julia? Money. People who are poor don’t get good health care or can’t afford healthy food, or can’t afford vaccinations to prevent diseases. What else? Education differences? People with limited education might not know as much about preventing disease. Right, good! Yes? I read that heart problems in women are often overlooked. Maybe being male or female relates to health disparities. Yes, there is a lot of research on that. Yes? Another is race and ethnicity. For example, I know that African Americans are more likely to die from heart disease than white people. There’s also lot of research showing that race and ethnicity relate to health disparities. Jason? It seems like genetics might also relate to health disparities. For example, people with light skin tend to get more skin cancer. That’s not discrimination, it’s just biology. Maybe certain races or ethnic groups are more prone to certain diseases for genetic reasons. That’s a good point. We’d call that a health inequity. But unequal treatment or unequal opportunities between groups also could be a factor causing health disparities. When we think about health disparities and social justice we need to consider all the possible factors that could cause health differences. That’s why people do health disparities research, to learn how to correct or prevent health disparities by examining factors like these very carefully. Yes? What about deaf people? Do we have health disparities that affect us? Well, remember the deaf population is made up of many subgroups. People who were born deaf, people who lose their hearing in old age, people who sign, people who don’t sign, people who are deaf for genetic reasons, people who are deaf for other reasons, and so forth. There isn’t just one deaf population. There’s many. Wow, just think of all the different deaf populations within the Deaf community that researchers would have the opportunity to examine! Right. Unfortunately, there’s very little research on health disparities and any deaf population. If social justice is important, deaf people should be included in health disparities research! Sorry, I didn’t see you. What did you say? Oh, I said, if social justice is important, then deaf people should be included in health disparities research. Now, I understand your feelings. I feel the same way. What little research there is shows that adults who were born deaf or became deaf early in life have worse health than the American population in general. However, a lot more research would be needed to understand more about this. Compared to the amount of health disparities research that’s been done with these groups, extremely little has been done with deaf people. That situation isn’t right! It’s a big opportunity for improving social justice. Right! Let’s brainstorm together. Why might deaf people be at higher risk for health disparities than hearing people? For now, let’s focus on people who were born deaf, or became deaf very young. People like you who are sign language users. What barriers do deaf people experience that might create health disparities? Martina? Well, like you said, if there isn’t enough research about deaf population health, then scientists and government won’t know what the problems are or what to do about them. Right! No data. That’s a huge problem. Why do you think scientists don’t have much data on the health of deaf people? Julia? My mother told me she got a telephone call that asked her lots questions about her health. My mother’s hearing. She said it was a research survey. Researchers probably don’t know how to contact deaf people, like with videophones or TTYs. So, deaf people are left out of telephone surveys. That’s a good point. A lot of research is done using telephone surveys. Jason? Researchers also send questionnaires through the mail, but they’re in English and many deaf people are not skilled in English. Right. Does anyone know the average reading level of deaf high school graduates in the United States? About… fourth grade. Wow, that means most deaf people won’t understand the complexity of the language, or the vocabulary in health research surveys. Sad … but true. Yes? So if we don’t have health data from deaf people, then we don’t know what the problems are. Scientists can’t decide what are the most important health disparity problems to work on. And without health data from scientists, other people can’t design effective health education and health intervention programs for deaf people, either. Exactly! All of this relates back to the lack of health research data on deaf people. What other barriers can you think of that might lead to health disparities in the deaf population? Julia? There are barriers to getting good health care. Most deaf people I know aren’t satisfied with their communication with their doctor. Yeah. There are only a few deaf doctors or hearing doctors who sign fluently. Some doctors refuse to hire interpreters and many don’t take the time needed for good communication. Language barriers lead to health disparities for many groups who don’t tend to use English. Research with these other groups, like people who speak Spanish, shows that improving communication with doctors helps them follow doctors’ recommendations better. Following doctors’ recommendations is good for anyone. But it’s especially important for people who have chronic diseases like asthma, diabetes, or some lung and heart diseases. Yes. Tiffany? And if communication is better, maybe doctors can detect health problems earlier, instead of waiting until a health problem, like cancer, becomes really serious. Right. Communication is so important! This is related to communication. What about problems deaf people have understanding health information, like information in magazines or the web? Many deaf people already have limited reading skills. Understanding medical vocabulary is hard for a lot of deaf peope. Even me sometimes and I’m a college student! Well, that’s a common problem in groups that aren’t fluent in English. Not understanding medical words, expressions, or concepts like medicine side effects could lead to health disparities. We call that health literacy. Yes? Many deaf people may not know much about their family medical history. But, doctors ask questions about it all the time! I don’t know much about my family’s medical history and my doctor always seems surprised. Why is your doctor surprised? He expects me to be like a hearing person who overheard my parents talking about our family’s medical history when I was growing up. My parents can’t sign. Our communication is limited. The doctor doesn’t realize that. My younger sister and I were talking about this recently. She’s hearing. She signs pretty well. And I couldn’t believe the thing she knew about our family’s medical history that I didn’t. She said she learned it all at the dinner table during conversations. I was usually left out of all that. Also, hearing children can hear what their parents say when they talk to each other about your health. Or when they talk about you in front of doctors and nurses. Deaf people miss out on that information, about their own health! Yes? I’m wondering...
I know that some diseases are more common in deaf people than in hearing people, like Usher syndrome, just because of genetic reasons. Yes. We need a lot of research on diseases that might be linked to hearing loss itself for genetic reasons or other reasons, like people who become deaf because of rubella or meningitis. Martina? I bet if the average deaf person and the average hearing person had the exact same disease, let’s say diabetes or some genetic disease, I bet that the deaf person’s health would eventually be worse than the hearing person’s. Why? Because of all those barriers put together. Even with the same disease, the average hearing person doesn’t experience the same challenges with communication and reading. And there may be better scientific data about hearing people with that disease. And also those other factors we listed can affect deaf people. Lower income, less education...you know, things like that. Okay. It’s time to stop. This has been a great discussion! You all are right. Deaf people are at higher risk for health disparities. And, that is a real social justice issue. Now, for next week, I want you to think of two ideas that would reduce these barriers. Pretend you are writing a letter to some high-up public health official. Come up with two recommendations for them. Things that politicians or scientists,
public health workers, and so forth, could do to improve deaf people’s health.
Send me your papers by Monday. Okay? See you next week.
Hello! Last week in class, we were discussing social justice as it relates to health disparities and health inequities. During our discussion the issue of how these topics relate to deaf people was raised. The class brainstormed the possible barriers that deaf people experience
which contribute to this problem. We noted four issues. First, there is very little data collected regarding the health of deaf people. Second, communication access to health information and health care is a significant barrier for deaf people to contend with. Third, many deaf people have low health literacy, in part as a function of limited reading abilities that make medical terminology difficult to comprehend. Fourth, there are biological factors, genetic or otherwise, that may cause hearing loss as well as other health inequities. After that discussion, I asked each student to come up with two recommendations to address these barriers for their homework. Today, the students will return to class and we’ll discuss some of the very good ideas they came up with! Hey...Good morning! Good morning! I read your papers. I was really impressed! You offered so many good ideas about how to reduce health disparity risks among deaf sign language users. I chose six of your recommendations
for us to talk about today. Nick, you were one of several people who suggested this first idea. Can you explain more to us about that? Okay. All health information on web sites, podcasts, television, even health information that hearing people get from the radio should have captions or a way for deaf people to get transcripts. Sure; that would be a big help. Now, your paper also said that health information designed for children should have captions or transcripts. What was your thinking there? Not just for deaf children but for hearing children whose parents are deaf. That would help deaf parents make better decisions about their children’s health as well as their own. No, no. Not just that. I think that information should also be available in American Sign Language. That would be a lot better for many deaf people than English captions or transcripts. Martina? But translating English into ASL isn’t easy. Many medical terms don’t translate well into ASL. Oh...I wouldn’t trust many public health experts to know how to make really effective sign language films for deaf audiences. Mm mmm. Yeah...Tiffany had something about that problem in her paper. Would you like to explain a little bit more about that? I had said that public health people should collaborate with the Deaf community to make health information appropriate for a variety of deaf people. Deaf people should be involved early, during the planning and creation of these materials, so the outcome fits our needs. Mm hmm Oh, and also I said that deaf people should be involved in how disaster information and emergency communication plans are made in different communities or states. It’s very hard for deaf people to get information during emergencies like tornados and floods, especially when the electricity is out. Right! And disasters like that are a part of public health’s responsibility. Let’s talk about number 2, "Including deaf people in research." All of you suggested that! Martina, I like what you said about this. Would you please explain what you wrote about to the class? Well we already have many health surveys and research that’s already going on. We just need to include deaf people and make sure they can answer surveys and participate in research accurately. And, how do you suggest that happen, exactly? Well, um, the surveys should be offered in ASL. Sure! That technology’s improving. But what about telephone surveys? Well, like Tiffany said, researchers should collaborate with deaf people to figure out how to solve that problem. Julia? I don’t know. Even if there were surveys in American Sign Language, I think many deaf people wouldn’t trust hearing researchers and wouldn’t want to get involved. Besides, deaf people aren’t used to being part of research studies the way hearing people have been. Research would be a very new thing for many deaf people. It might be scary to them and make it hard to recruit deaf people to get involved. Great point. What could be done about that? Niki? The way scientists recruit deaf people must match our community and our Deaf culture. Yes? The best way to do that is for scientists to work with the Deaf community as partners in research. The data and results would be so much better. That idea is called community-based participatory research. The abbreviation is CBPR. That’s good. That relates to idea 3. Whose idea was this? That was my recommendation. Including deaf people in health research is great but only if the information collected will really help improve knowledge about deaf people’s health. Can you explain a bit more, please? For example, if a survey just asks "Are you deaf?" like a yes or no question, then we won’t know if they are someone who was born deaf, or an adult who recently lost their hearing. Yes. Think about someone who grew up deaf compared to person who lost their hearing at age 60. Their health knowledge and experiences are totally different! Wow, that’s a really good point. I think researchers should ask more questions about the person’s background. Yes, we call those demographic questions. Yeah, like do you use sign language, what kind of sign language? Did you go to a deaf school or mainstreamed school? Did you have deaf parents? Things like that. Yeah, I understand. All those different experiences could influence health literacy, access to health care and other things related to health disparities. Wow, that’s really complicated. It sure is! How do we help scientists come up with the right kinds of questions? What you said, CBPR, involving deaf people in research. I suspect most scientists are really uneducated about sign language, growing up deaf, Deaf culture, and the Deaf community making it very difficult for them to interpret their data accurately. Maybe the results they think are true are really wrong and don’t fit our community and culture? That leads to idea number 4! How do we get more deaf people involved in public health activities like research so we can help scientists and other public health workers do a better job? We deaf people should do public health research ourselves! Naturally! Yeah. Many people like you are getting the education they need to be the future generation of scientists, or doctors, or politicians, or other kinds of professionals who can bring us the information we need to reduce deaf health disparities. That’s another point many of you raised in your papers. Now this fifth point. What are some other ways deaf people can get involved in public health? Remember, not all deaf people go to college like you. Tiffany? Well, back to CBPR. Public health professionals should reach out to their local Deaf community. Every city in America has one, whether it’s big or small. It isn’t that hard to find a way to get in contact with deaf people. Any hearing person could do it if they tried. Instead of waiting for researchers to come to us, we could go to them! Deaf people could go to conferences about public health and talk about these issues. I’m from Atlanta, Georgia and I know there are big public health conferences there often. That is a great idea but those conferences would need to plan for interpreting services,
captioning, and other accomodations. If not, deaf people won’t go. Right. But equal access is required by the Americans with Disabilities Act. True ...if conference organizers knew how to make those communication access plans. Many don’t. That’s why they need to hear from deaf people like us who want to participate in those conferences. Let’s move on to recommendation number 5. Jason, you mentioned earlier that more deaf people should pursue public health careers. Can you explain more about that for us? The fastest way to make public health research or health care services better for deaf people is to become leaders in these fields ourselves. Yes? I’ve seen advertisements that promote health careers for minorities. There are scholarships and other special programs to encourage minorities to pursue careers in health care research, or get involved in practicing medicine. But...do those opportunities include deaf people? Many people don’t understand that Deaf people are a linguistic and cultural minority. You’re right. Some of those career development opportunities are for racial and ethnic minorities and deaf people often are not included. Ugh. That’s not fair! Social justice and health disparities apply to us too! You’re right. So, we have to educate hearing people why the signing Deaf community is the same as a language and cultural minority group. I read an interesting article. It talked about how young deaf people who are studying to become health care professionals often have interpreters in the classroom, but still don’t have access to the informal curriculum. Right! Can you explain to the rest of the class what informal curriculum means? Well, it means all the learning that happens when you are not in a classroom or formal teaching situation. For example, discussions between students when no teacher is around or casual discussions with teachers after class, or with mentors, or even social gatherings where people talk about work. Yes, at the professional education level, a lot of learning happens through the informal curriculum. Equal access for deaf students to the informal curriculum at that level is a special challenge. But new ideas like designated interpreters are becoming more popular for deaf persons in professional training programs. Nick? I know there aren’t many, but they are out there. There are some signing deaf people who are doctors, nurses, researchers, and public health workers. I’ve read articles and books written by several of them. Hm hmm. Medical schools, graduate schools, and other programs should contact these deaf professionals and the schools where they trained. Mmm. These deaf professionals are pioneers. They could help other schools understand how to teach and mentor deaf students successfully. You all have really thought through these various issues. More deaf professionals and deaf researchers would really help collaboration with public health workers. That would improve things for everyone! Let’s look at the sixth recommendation "Funding to support communication access." Julia, you said something important about that. Well, the idea is simple but very important. Interpreter services are essential for communication between deaf sign language users and health care providers. Without more access to interpreters, it will be impossible to reduce deaf health disparities. Training more deaf doctors and nurses is a great idea but that won’t happen fast enough to reduce the health disparity deaf people experience throughout America. My comment is about interpreters and research. I went to a conference and talked to a person doing deaf health research. He complained that he has to pay for interpreter services from his research grant budget. He felt that that cost wasn’t fair. Researchers who were studying the same health problems with hearing people don’t need to pay for interpreter services. That made sense to me. He thought the grant agency should give him extra money for the interpreter costs. He called it a supplement, which does not charge his regular grant budget for interpreters. I thought that was an interesting point of view. It really isn’t fair, compared to hearing research budgets. Hearing researchers can spend all their grant money investigating the health problem. But he has to spend a lot of his grant money paying for interpreters. Ugh, there! There’s another example of a deaf health disparity! Right there! This has been a great discussion. But we’re out of time. So, who’s going into public health work in the future? Jason? Wow! I feel inspired! I want to get involved in public health research! I’m applying to medical school! Hmm...Well good luck, doctor!
Examples of Health Conditions That Have a High Prevalence Among People Who Have Been Deaf Since Birth
| Prevalence, General Population | Prevalence, People Deaf Since Birth | Difference | |
|---|---|---|---|
| Hereditary long Q-T syndrome | 1 in 5,000 | 3 in 1,000 | 15 times higher |
| Retinitis pigmentosa | 1 in 4,000 | 3%-10% | 120-400 times higher |
Source: Goldenberg and Moss (
Source: National Library of Medicine (
Source: Barnett et al (
Deaf-Related Demographic Measures Important for Public Health
| Examples | ||
|---|---|---|
| Essential measures | Age at onset of deafness | Implications for designing intervention programs, such as those that target families with a deaf child, or school programs with deaf children, or organizations of people with adult-onset deafnessTemporal relationships help identify risk (eg, is being deaf or hard-of-hearing a risk factor for developing diabetes, or is diabetes a risk factor for acquired hearing loss, or are both true?) |
| Hearing level (to distinguish deaf, hard-of-hearing, and hearing) | Identifies health and risk behaviors for groups unable to participate in telephone surveillance, such as the current Behavioral Risk Factor Surveillance System (BRFSS) | |
| Laterality (unilateral or bilateral) | Identifies risks for populations that may have no access to chronic disease prevention interventions that use audio-only format (eg, radio, telephone) | |
| Preferred communication (including primary language) | Implications for access to health information (in terms of language, modality, and culture) | |
| Potentially important measures | Education setting history (eg, deaf school, integrated programs) | Identifies adult chronic disease risks that may be associated with a childhood education setting, allowing for evidenced-based selection of targeted health promotion interventions for that setting |
| Deaf family members | Implications for access to information in the homeImplications regarding genetic risks for chronic diseases | |
| Usher syndrome (progressive vision loss present in approximately 3%-10% of adults who have been deaf since birth or early childhood) | Identifies chronic disease risks in a population with limited access to audio and visual health promotion and disease prevention messages | |
The information presented is not exhaustive.
Source: Bainbridge et al (
Source: Barnett and Franks (