What I Learned from Surveying 471 People with Voice Disorders
A quick summary:
- Voice disorders significantly affect an individual’s social life, emotional wellbeing, and career.
- Certain situations such as speaking on the phone and speaking in a noisy environment are particularly difficult for individuals with voice disorders.
- People with voice disorders want unobtrusive and affordable technologies to help improve their intelligibility.
This article summarizes my presentation at the Workshop for Speech Processing for Voice, Speech, and Hearing Disorders (WSPD) on September 9th, 2018 in Mysore, India.
In the United States, 9.4 million adults have trouble using their voices, often leading to a decrease in an individual’s intelligibility — their ability to be understood. I had a chance to survey 471 of these individuals with voice disorders to learn more about how their voice disorder affects their lives.
The motivation behind my research is succinctly summed up by a quote from one of the responses to the survey:
“Your voice is you. Your intelligence, emotions, abilities all come through in your voice… without it you become invisible.”
As a computer science Ph.D. student, I want to help people with voice disorders be seen and be heard, but most of all, I want to help them to be better understood. Below you’ll find the results of this survey and the implications that they have for researchers like me:
1. Effects of Voice Disorders
Voice disorders often result in a decrease in intelligibility that has far-reaching effects in an individual’s life including a decrease in social interactions, a decrease in emotional well being, and difficulty finding, keeping and advancing in a career.
Social Effects:
When asked about how their voice disorder affects their lives, 41.11% of survey respondents indicated that they had decreased their social interactions as a result of their voice disorder. Social outings become stressful events that individuals with voice disorders often avoid (39.91%).
The survey indicated that for 30.39% of respondents, the presence of background noise is a big determining factor as to whether or not individuals with voice disorders participate in social engagements. The ability to be understood significantly decreases in the presence of external noise making trips to noisy restaurants, bars, or parties notably more stressful and frustrating for individuals with voice disorders.
Meeting new people for the first time has also been indicated by 10.44% of respondents to be a difficult situation that contributes to the overall decrease in social interactions for individuals with voice disorders. An individual’s intelligibility generally increases if they are familiar with their communication partner. In response to the statement “People are less likely to understand my voice when we first meet than after I’ve known them for a while” 62.1% of respondents either agreed or strongly agreed, while only 15.4% disagreed or strongly disagreed.
Career Effects:
Having a voice disorder can have a significantly negative effect on a career. When asked to respond to the question ‘How does your voice disorder affect your career?’ respondents expressed that it is difficult to acquire, maintain, and advance in a career when diagnosed with a voice disorder. Of the responses, 81.22% discussed the negative effect that their voice disorder has had on their career. Even further, 28.71% of respondents shared that their career had ended due to their voice disorder, whether they lost a job due to their voice, or had to retire early because of their voice. Of the participants, 59.62% reported being discriminated against, 25.42% of respondents described workplace discrimination, while other respondents mentioned being perceived as less intelligent because of their voice and being dismissed by communication partners.
A quick aside: As an individual with a voice disorder, you are protected under the Americans with Disabilities Act (ADA). Under the ADA employees with disabilities have the right to ask their employers for a reasonable accommodation. If you are in the workforce right now and your voice disorder affects your ability to work, consider starting a conversation with your employer regarding reasonable accommodations as found on the Job Accommodation Network (JAN).
Effects on Emotional Wellbeing:
When asked to respond to the question ‘How does your voice disorder affect your life?’ 30.95% of the respondents mentioned one or more of the following: stress, anxiety, frustration, isolation and/or depression.
With fewer social interactions, difficulties finding, keeping and advancing in a career, and the prevalence of discrimination it is not difficult to see the connection between having a voice disorder and a decline in emotional well-being. Many respondents admitted to being lonely and withdrawn due to their voice disorder. In discussing the emotional effects of having a voice disorder, a decrease in overall confidence as well as worrying about how they are perceived by others.
When asked if the participant had ever experienced discrimination due to their voice disorder, 59.67% of the respondents indicated that they had experienced some form of discrimination because of their voice. Most of this discrimination manifests as people with voice disorders being overlooked for promotions because of their voice or not getting jobs or interviews because of the way they sound.
2. Certain Situations are Particularly Difficult
The survey addressed the idea of difficult situations, barriers, and limitations through two questions, one close-ended ’choose all that apply’ question, and another open-ended prompt that asked respondents to “List any activities that you can no longer participate in due to your voice disorder.” From these two questions, we were able to identify several situations that are particularly difficult for individuals with voice disorders to participate in.
The most commonly reported difficult situation was speaking on the telephone (91.3% of respondents), followed by speaking in a noisy environment (86.55% of the respondents). Ordering food at a drive-thru was reported as one of the most difficult situations to be understood as 339 respondents indicated (74.08%). Speaking with a new person was also reported to be difficult by 285 participants (60.88%). The least mentioned difficult situation to be understood is speaking with family and friends, however, 142 individuals (28.85%) still reported having difficulty speaking with family and friends.
When asked to list which activities they no longer participate in because of their voice disorder, the results were very similar to the results from the close-ended question. In the open-ended question, respondents reported the loss of general communication abilities (32.91%), singing (27.00%), social interactions (23.31%), public speaking (22.42%), group conversations (21.19%), and teaching (9.21%). Only 11.17% of the participants responded that they have no limitations from their voice disorder. It follows that 88.83% of the respondents reported that they have experienced a limitation or barrier because of their voice disorder.
As a researcher who builds and designs assistive technologies these particularly difficult situations scream opportunities for innovation. By building technologies that help individuals with voice disorders be better understood in these situations, we can hopefully decrease some of the negative effects voice disorders have on the lives of individuals with voice disorders.
3. People with voice disorders want unobtrusive and affordable technologies to help improve their intelligibility
While 88.83% of respondents have experienced a barrier or limitation due to their voice disorder, only 1.75% reported use of a voice-assistive technology. When asked if they would be willing to use a technology that helped them be better understood, 63.16% of the respondents reported that they would use a voice-assistive technology.
There are not many options for individuals with voice disorders when it comes to voice-assistive technologies. One of the most commonly used voice-assistive technologies is amplification systems. One of the more popular amplification systems is ChatterVox, which is a system that consists of a head-worn microphone, and a belt that contains a speaker. This system is bulky, intrusive, and it mainly addresses voices that don’t have sufficient volume to be understood. If an individual has a different problem with their voice — misarticulation, tremor, etc — ChatterVox just amplifies the voice that was input and doesn’t really make it more intelligible.
In order to get a better idea of what kinds of technologies individuals with voice disorders are interested in having developed, we asked the question ‘What kinds of technologies would you like to see developed for your voice disorder?’. The most frequent response to this question was ‘better amplification systems’ (19.55%) followed by ‘I’m not sure’ (15.86%), and ‘speech smoothing device’ (9.63%). In general, the respondents had a strong preference for technologies that were speech-based (67.42%) rather than text-based (9.63%). Among the responses, the idea of making whatever technology that is developed unobtrusive and affordable was consistently reported.
One thing that was consistent across most answers was that these individuals really just want their ‘normal’ voice back. They want to be able to be understood without the stress of worrying what their voice will sound like, and if they will be understood or judged. In the words of one of the respondents:
“I have amazing, thought-provoking, earth-changing things to say. I would love if someone could help me make it as easy as it is for everyone else to say them.”
Conclusions/Takeaways
Whew, that was a lot of data. What should you actually walk away knowing from all of that?
- Having a voice disorder commonly leads to negative effects on an individual’s social life, career, and emotional wellbeing.
- There are a few situations that stand out as particularly difficult for individuals with voice disorders including talking on the phone, speaking in noisy environments, ordering at a drive-thru, and meeting new people.
- Individuals with voice disorders want affordable and unobtrusive technologies that will help them get their ‘normal’ voice back.
So, if you’re a researcher like me, I hope that you’ve taken away the importance of including the individuals who will eventually be using the technology you’re developing in the design process. This person-centered design paradigm ensures that the technologies you develop will be useful to the target population while helping you to gain a multifaceted and generally better understanding of the problem.
But, if you’re someone who is living with a voice disorder, I hope that you can walk away knowing that you are not alone in experiencing these challenges on a daily basis. I also want you to know that I’m working on developing systems that will help you to be better understood in the situations where you find it the most difficult to be heard and will do my best to keep you involved and informed in the process.
And most importantly, if you were one of the 471 kind souls who contributed their thoughts, experience, stories, advice, and encouragement in the survey, I want to say a HUGE
THANK YOU!!!
I’ve thoroughly enjoyed reading your thoughtful responses, and have learned more than I could have hoped from your insightful observations, experiences, and stories. I look forward to working with you in the future and can’t wait to see what we build together.
