Time to drop the ‘S-word’? Darleen Wilson on why the hearing industry should end focus on stigma

Hello, and welcome to another episode of This Week in Hearing. I’m Brian Taylor. My guest this week is Darleen Wilson. She’s a writer, musician, and, among other things, an advocate for persons with hearing loss. And you might even be familiar with her work as the blog hearability.space. Darleen, I want to welcome you to This Week in Hearing. It’s great to have you with us. It’s great to be here. Well, I’m really anxious to have this conversation with you. I’m looking forward to it. And before I start asking you some questions about advocacy and things that you’ve written about on your blog, I thought it’d be a good time for those that might be unfamiliar with you to tell us a little about yourself and your interest in being an advocate for persons with hearing loss. Okay, I’m a musician. I started playing piano at a very early age, eventually migrated to guitar because it was portable. I spent 20 years as a recording engineer and music producer, and I really fascinated by sound, acoustics, timbre, et cetera. So I was always attracted to every aspect of sound. I was aware of hearing loss, but I took my hearing for granted as an engineer and producer, I worked in different studios, and every place you are, sounds a little different. So the one consistent soundscape for me was headphones, and I wore them way too much. Days were very long. 12 to 14 hours. Days were common, and evidently, and eventually I paid the price. So when I realized that I was starting to lose my hearing, I started to pay attention to what worked for me, what didn’t, and I started researching, exploring what’s available. And of course, there’s lots of frustration. I know how much sound can be manipulated, so I expected to be able to apply that knowledge to hearing aids, and I haven’t been able to. So that’s been a frustration. And just as I became more and more aware of how many other people struggle with hearing loss and how much of that loss is preventable, I started doing more and more research. And eventually I just had to become more of an advocate for others as well as myself. No, that’s great. And those are all reasons I wanted to have you on This Week in Hearing. I think you have a really valuable perspective, not only for hearing care professionals who is our primary audience, but also we have a fair number of consumers that tune into our little broadcast here. So I think your perspective is going to be really valuable to any of our viewers. I wanted to start the conversation, if I could, with one of your most recent posts where you talk about something called the ‘S word’. Could you tell us a little bit about what that /S/ word might be? I actually don’t want to say it, but I don’t want to give it any energy. But for the sake of this discussion, I will. The S word I’m referring to is stigma. That’s what the article is about. Just thinking about stigma and what it is and why it is and what good is it? Well, I don’t know if you want to elaborate on that a little bit more or if you want just to have people go to your blog and read about it. I’ll leave that up to you. Well, sure. I’d love for people to go and read more about it. I cannot elaborate. Basically, all I’m saying in the article is that the more I started researching about hearing- hearing loss, the more I kept bumping up against this word. And I just don’t really understand what use that is for me to bump up against that concept. So thinking about how did that come to be? Well, it makes sense. The technology for hearing loss, even beyond the old hearing trumpet back to the in the 40s vacuum vacuum technology, vacuum tube rather, technology for hearing aids and then transistors in the 50s and beyond transistor hearing aids. You’d have this battery pack in your pocket and you’d big, like bigger than these whoops going up to your ears. And yeah, they were really clunky. And I actually feel like it wasn’t just that they looked bad, it was that they really didn’t work very well. So you’d have like, howling feedback. People who were wearing them were really struggling. So the association between hearing technology and hearing loss was all negative. And I feel like technology has evolved a lot since the 40s, 50s 60s, even since 20 years ago. And yet we’re still referring to a phenomenon that was I believe they’ve sort of borne all that time ago. We’re keeping it alive. And I just don’t understand who that helps. Yeah, no, I think that’s a really useful perspective, and I want to explore a little bit more as we talk here in that article about the ‘S word’, you say something along the lines of technology for managing hearing loss has evolved, but the talking point points haven’t kept up. Can you tell us what you mean by that? Well, I just mean that if people of 100 years ago or 80, 50 years ago, whatever, are relating to these devices that are not helping. Right? I think if the early versions of hearing devices really worked, it wouldn’t matter what they look like. I think they would be associated with an aura of magic, because all of a sudden, people are able to hear, and I actually feel like they’re not perfect now. There’s a lot more improvement that needs to happen, but it is happening. And I feel like that’s where we need to focus our energy. I want to be talking about what is working, how we can facilitate better communication. All this information is out there. There’s some great bloggers who are providing information, websites that have more information. I just feel like that’s where we should be concentrating our talking points. Well, again, with each response, I can think of two or three more follow up questions. But let me just kind of take one vein of thought that you just mentioned, and I think everybody’s familiar with hearing loss of gradual onset in adults is a really big problem. Depending on the study that you read, somewhere between only 15% to 30% of people that need hearing aids actually wear them. So from your perspective, what can audiologists and hearing aid manufacturers do differently to better address this unmet need? Well, that’s a big one. First of all, hats off to audiologists. I think it’s a really tough gig. I think the source of the problem is that as a culture, we do not really value hearing. We don’t value listening. We don’t teach people to listen. So I think as a culture, we really need to do better in that way. Um, I’m thinking in terms of, you know, I have a great personal doctor. Her right now. I finally got one who’s great. The first time I met with her, she did a pretty thorough exam, and when I read her notes later, she completely skipped that I have hearing loss, which to me is very central to my experience and my identity. And I know had I talked about it, but it didn’t show up in her notes. And this is somebody whose work I deeply respect and who’s helped me in other medical matters very much so. I think it’s a big challenge, and I don’t think it’s just audiologists and hearing aid manufacturers can address it all alone. I think education is key. I’d like to see it happening at earlier, younger levels to really train people to listen, because I think if we listen more, we would be able to differentiate between what’s helping us and what’s not. We would be able to partner with our audiologists, et cetera. Yeah, definitely. I think that’s a great point. Listening in general, I think, is undervalued in our culture. And then if you look at what happens inside of any medical office, I think that there’s a preponderance of professionals out there that probably don’t listen the way that they could for various reasons. So you bring up a lot of great points around that. So thank you for that. I wanted to ask you a little bit about in the same ‘S Word’ article that we’ve been talking about, you mentioned that there’s a lack of access to hearing care, that hearing aids are clumsily designed. And I would agree with that. If I looked at the ads that a lot of people run. I don’t know if you when OTC hearing aids became available last year, there was a lot of press about it, and invariably in each article, they would show somebody with a hearing aid that was made and looked like the 1950s. It was really big and bulky. Anyway, you mentioned lack of access, clumsily designed, but I think that today, at least in my opinion, there’s more places than ever to buy hearing aids. Not only do you have OTC, but Costco, Best Buy, lots of clinics around the country, and there are more styles than ever before. Fit in, around over your ear. Some look like AirPods and other kinds of wireless earbuds. So what am I missing? Maybe I’ve been in the profession too long. I have blinders on. Tell me your perspective on this. I’m really curious. Well, I think even though they’re more available, there are a couple of things. There’s a lot of noise that went out over the counter. Over the counter hearing aids. Hearing aids. You know, I. Even though there are more available and they’re less expensive, they’re still expensive. And if you try them and they don’t do what you want them to do, as we know, it’s not like putting on glasses where you couldn’t read the fine print, and now you can. It takes time to learn how to listen to acclimate the hearing aid, even if it is a good fit. So I think that’s one thing. The other is especially with gradual onset of hearing loss, the keyword there is gradual. It’s like a frog that doesn’t jump out of the boiling water because it’s gradual. You just kind of get used to this is how things sound. And even if you are conscious of that and you make a conscious decision to get a hearing aid and you can afford it, and you have somebody who’s really working with you, it’s still disorienting. You’re hearing crinkly sounds. You’re hearing all this stuff that you’re like, and it takes a while to train your brain. But I don’t think that that phenomenon is really explained or understood. I really feel like we need to do a lot more education. I’d like to see groups of maybe audiologists could host group meetings of people to talk about, what’s your experience? What’s mine? And people would start recognizing, okay, I’m not alone in that. Oh, you did this, and that worked. Let me try that. I think that we’re all very isolated, and hearing loss itself is an isolating phenomenon, so there’s a lot of impediments there. But I feel like things are getting better now. I’m like grumpy. Grumpy Yeah. I think most of us would agree there’s been progress made to addressing some of these issues, and there will continue to be an evolution over the next several decades, I’m sure. Another question I have for you is we have OTC. They’ve been around now since last October, almost a year. The uptake has been pretty slow. Last time I read, only 1% to 2% of all unit hearing aids sold in the US. Were OTC And that’s understandable that there’s going to be maybe the ramp up time is going to take a while. And then you also see third party reimbursement, Medicare Advantage programs. More and more of them are offering insurance, offering hearing aids as a benefit. So given all that and the evolution we talked about a little bit from your vantage point, what can Audiologists do to improve the image of hearing aids? The image? Sure from a marketing standpoint, I guess if we’re trying to have people imagine hearing aids differently, maybe we could call them hearing instruments. They are instrumental in helping you hear, I think, to improve the image of hearing aids or need to concentrate on what the experience is, the benefit, not what they look like, not pictures of white haired people smiling, which is fine. I mean, I’m all for anybody smiling. But I think that there are ways that with technology now that you can have interactive experiences. I think that there are a couple of things soundly.com. This program, for instance, This Week in Hearing, I think has been very edifying for me to hear about different things that are going on national acoustic laboratories, the guide to how hearing aid features explained. I think getting information out there in a very digestible way and a very safe way. Those are two examples or three included in the show or podcast of progress that will help people kind of come along. Right? No, it takes time. I agree with you, and I think you’re seeing some efforts in different areas. I think you make a really great point. Earlier you mentioned. I think that it’s really interesting to me that when an infant or a child has a hearing loss, there is a full range of resources that are brought to the table to help them. Because everybody understands that the earlier the intervention, the more successful that child will be in school, learning, so on and so forth. And I think that’s a huge gap with adults. We don’t have the same urgency. In fact, we sort of take it for granted that somebody’s going to lose their hearing and that we kind of laugh at them when we have to repeat or they look kind of silly because they misunderstood. And that’s a societal thing that kind of impacts why physicians sometimes just ignore hearing loss altogether. I know they have a lot of priorities, but as a profession, as an advocacy group, I think we need to do a better job of getting the word out there. And you’re starting to see that in some places. Yeah. I mean, the connection between cognitive decline and hearing is here. We see more and more about that. My one concern there is I’m not sure how clearly they make it, that it is not causal, that it is associative, but really the ear has so much to offer our general well being and health. And the more we can get that message across in medical schools, I think that younger people are much more forgiving about issues to do with hearing and hearing loss. I know it’s a sort of problem of a species that whatever, it’s like the Lord of the Fly syndrome or something where I’m sorry, I just went into it is not that it feels good to have hearing loss, and certainly there are struggles, and I definitely feel for everyone who is struggling with that. But I feel like we can actually kind of say it loud and be proud because there’s so much to offer there to our own generation and those to come. Yeah, that’s a really positive message. Another point I wanted to elaborate on that you just mentioned around the hearing loss and cognitive decline, dementia. I think that’s an important message. But I think what’s lost is that something like 85% of people as they age do not have dementia, and there’s a normal aging process associated with hearing loss that we sometimes forget. And I think focusing too much on the hearing loss and dementia link probably alarms people too much, and we have to be careful about that message. I agree very much. Anyway, I just wanted to any final words of wisdom or advice that you have for our viewers, for the public at large, you have a really unique vantage point and perspective on all of this. I’d love to hear what words of wisdom and advice you might have for our audience. Well, I guess there are two things I want to say. One is there was a lot of reaction to this article, and I just want to make it clear that I appreciate so much the work that other advocates are doing, have done. It’s hard. It’s hard work. So that’s one thing I just want to put out there. I think probably the most important thing we can do at every level from whatever vantage point as patient or kid or adult or doctor or whatever is listening. It’s like really learning how to listen, focusing on listening. I would love for there to be an advocacy component. I don’t know much about how audiologists are trained. That’s something I want to learn more about. Maybe you can point me to some resources, but I feel like learning about learning how to listen. And how to differentiate different environments can go a long way to improving how you navigate the world with or without assistance, hearing assistance. And I think one other piece is I would like Audiologists to love for there to be an advocacy component for dealing with the noise in our environment, because things are just getting louder and louder and louder, and so sirens get louder, and so this gets louder, so that gets louder, and that’s doing a lot of damage. So I feel like a consciousness about bringing some peace into the sonic experience would be helpful. Well, I think that’s great advice. So for any of you Audiologists hearing care professionals out there, now is a great opportunity. I think Darleen presents a great opportunity to have some sort of a group in your community that raises the awareness of the harmful effects of noise and maybe some of the limitations of hearing aids when they get into noisy situations. The more your community knows about your expertise and how you can help them, the more everybody wins. Agreed. Darlene, tell us, how can people access your blog? Okay, the address is www hearability.space that’s? H-E-A-R-A-B-I-L-I-T-Y. Easy to mistype it so the ability to hear hearability. space. Okay, we’ll make sure that there’s a link in the notes here so people can easily access that. Darleen Wilson can’t thank you enough for taking time sharing your expertise. We appreciate all that you’ve shared with us today. Thanks for being on the program. Thank you, Brian.