This is the 9th part of my wishlist to audiologists and accousticians, hearing aid manufacturers, and the health care system. If you like to add something, share your experiences, or provide more information, I encourage you to submit a comment.
When my hearing aids break, I am not able to go to work. I mean I could go there, but I would not be able to communicate with my coworkers properly. Also, I have to spend time at the audiologist, to hand in my hearing aids and get the spare hearing aids (roughly) tuned. Wearing poorly tuned hearing aids cause me headaches, which also reduce my work performance. The audiologist visit takes time, but I have no idea if I can officially call in sick for that. I am wondering if my employer can actually fire me if that happens too often. I asked this question several audiologists and none of them could give me a definitive answer.
Same applies to when my hearing aids break when I was doing something that might be considered “risky” with respect to the hearing aids. For example, am I allowed to attend a martial arts class with my hearing aids? Can my insurance refuse to pay the reparation if they break during that class? What about when I accidentally have a shower with my hearing aids on? (It happens because when you wear them every day, you forget that you are wearing them.) What about when I attend an open air concert, it starts raining and I did not seek cover, because I did not want to miss the awesome performance? Those situations might sound constructed, but actually they happen if you are are not an old grandpa, but a young person with an active life.
There are a lot of situations related to hearing aids where there is no legal certainty for the patient. Sick leave and reparation costs are only examples here.
See also the next point on my wishlist: Waterproof Hearing Aids. Or the previous one: Offer tuning in realistic circumstances, legalize and support self-tuning.
You need a lawyer with knowledge of (German? American? Wherever you are.) disability law. Not an audiologist.
The conditions under which your hearing aids will be replaced should be outlined in your insurance paperwork, if they are privately purchased. If they are state provided, your audiologist and acoustician can outline the rules. You may need to occasionally firmly remind all parties that you are, in fact, under the age of 65.
Your responsibility as the wearer is to assess the risk your actions will take to the hearing aid. I wore my hearing aids to Krav Maga, and the instructor was happy to work with me to ensure that any blows to my ears were extremely unlikely and truly accidental. When I took a kayaking class, I wore hearing aids for everything but the capsize test, because I didn’t think my chances of going in the water accidentally were very high. (This was perhaps a little foolish but the odd splash or droplet or heavy sweat has never damaged my hearing aids.)
The matter of getting wet is particularly problematic; because this is a known flaw in hearing aids, you are more likely to be at fault in case of immersion–I have some hopes of the Naida models from Phonak but it’s a very tricky problem to make waterproof hearing aids. Wear a rain jacket to concerts. Or carry an umbrella. Sometimes, I’m afraid, one has to accept that life just sucks and work within the limits imposed.
Thank you for your comment!
I explicitly said, that not all of my wished are addressed to audiologists. This is certainly one for lawyers. (I am in Germany btw.). The problem that it is not possible to get reliable information from any other sources than lawyers in this case. I think the questions that I asked are not that uncommon, but I am negatively surprised, that none of my acousticians or ENT doctors who deal with hearing-impaired in the first place, could give me an answer. Also digging through various internet websites and forums for the hearing-imparied did not help. Calling my health insurance did help in some cases. My insurance papers did not explicitly mention these things. This point on my wish list expresses that I find it sucks that I actually need to contact a lawyer (which costs time and money) for such common problems of hearing-impaired people. I just don’t believe that I am the first one who has those problems.
I also usually wear my hearing aids during sports. I am lucky that I am not a person that sweats easily, to sweat was never an issue. I was considering starting a type of martial art and in this case I called my insurance and the actually “allowed” it (which is totally the opposite of my experiences with them so far). So in my case, everything was fine, but I talked to a couple of people that had serious problems with sweat up to a point when their audiologists became more and more reluctant to repair the hearing aids over and over again. (I wrote this wishlist not only with my own problems in mind.)
Of course, I wear a rain jacket to a concert if it looks like rain. But my point is that insurance are made for those situation where you actually where not able to prepare. Maybe you did not anticipate the rain (I’m not in UK, you know ). Of course I take the reasonable measures that any hearing person would take not to get wet, but for those cases where that fails, I would like to have my insurance not bitch about it. Sure, life sucks in many ways, but insurances are made for exactly the sucky incidents which you cannot anticipate.
Helga — I think you are missing a key point: until now, these have not been common problems of hearing aid wearers because the majority of hearing aid wearers have been elderly (consequently, retired or in care, or not very active) or treated as mentally incapacitated, so again, in care. In which cases, the issue of replacement due to wear or time off to deal with these issues did not arise.
There are several reasons this is changing: first, screening at birth is now required in most Western countries so many more cases are being caught there. Second — and I know you think the current state is bad — hearing aids are so much more powerful and flexible that they help a broader category of hearing losses; when I was 8, if I wanted to hear the teacher in a crowded classroom, I had a massive hearing aid strapped to my chest with 2 hours battery life maximum; my regular BTE aids had a flat amplification. Third — I was just reading an article about this, I forget where — nerve damage hearing loss is on the rise in younger and younger demographics. (I don’t know if I believe that, people have been wearing headphones and listening to loud music and standing in front of concert speakers since Woodstock!)
While I think you make many good points, I also think you are making some very large, incorrect assumptions about the population wearing hearing aids in the previous decade, who have informed and influenced the existing policies.
I think Wren has a point in that the hearing aid population has probably changed a lot in the recent years. I was given hearing aids 25 years or so ago when I was a teenager, and I rejected them — huge, bulky, way too loud. If I’d been given the tiny shiny pair I’m wearing now, chances I would have worn them.
So I think the advances in technology mean that there are more and more young and active people (I include myself in the lot) out there with hearing aids. And indeed, policies and insurances have probably not caught up with this yet. I think it’s also up to us to make them aware of our existence.
I’ve been doing judo for many years and would honestly not imagine wearing my hearing aids on the mats except maybe for very light practice — way too much sweat, but mainly way too much risk of brushing hard against my ears (sometimes you have to squeeze your head out of somewhere).
However, I love sailing, and on the boat is clearly a place where I would benefit a lot from wearing my hearing aids, but my audiologist recommends against it (there is always a risk of falling in the water — though I haven’t fell in the water once these last 10 years). He did mention, however, that there are insurances one can take out. Living in Switzerland, insurance paradise, maybe I’ll find something that makes sense. I’ll be sure to blog about it.
I am honestly puzzled. I never criticized previous generations for their achievements. I totally agree that the current situation is like it is because so far there was probably not a big enough mass of people having the same problems. The fact that I think there are a lot of things that could be better does not mean that I do not appreciate what previous generations have already achieved. Seriously, I don’t understand where I should have stated that. A lot of things would be worse if those people had not fought for it, but that does not mean that everything is fine now and we should stop complaining.
I especially am puzzled to hear things like “You are lucky, you got hearing-impaired just a couple of years ago. It used to be a lot worse 20 years ago.” If course it was and I am damn happy that my hearing loss started only “recently”, but just because everything was even worse in the past does not mean that it is sufficiently good today. That’s like telling people to stop fighting for women’s right just because in the last 20 years the situation improved a lot for woman. Just because we have gone maybe 90% of the way, we should not stop before we have done the last 10%.
I think the fact that I get criticized for criticizing the current situation is because people who wear hearing aids for decades already got used to a lot of disadvantages and established their workarounds. If stuff gets into your routine you stop thinking about it and your conscience concentrates on other things. But in many cases I think it is resignation. People just get sick of their mood getting damped by the next asshole shouting at them because they did not understand what he said. I just haven’t accepted yet that life just sucks.
I still believe that if we speak up, we change things. I don’t see a reason to resign yet. My talk at the 28c3 raised a lot of interest in the hearing aid industry. Since then I have been in contact with several hearing aid manufacturers and journalists. I don’t understand what is wrong with pointing out the issues that hearing-impaired people have to deal with every day.
In former times, mainly old people have been hearing-impaired. Most of them were retired, thus not facing the same problems people in a business situation face. The world was not so well-connected, you barely had to speak to someone in a language that is not your native one. I think legal uncertainty is a serious topic in a business context. Especially in Germany, where it is very hard to get an official disability status for a hearing loss.
Helga– you do realize that it often sounds (intentionally or not) like you are accusing people who have had hearing aids for decades of not doing enough? Every time you ask, “well, why isn’t this-and-such done?” My answer will be, because there hasn’t enough of a network or purchasing power.
Before your hearing loss started, how many deafened people under the age of 65 did you know? Were you at school with any hearing aid users?
Your remark about women’s rights is irrelevant. Women make up 51% of the global population. The hearing impaired (using the most generous figures I could find from http://research.gallaudet.edu/Demographics/deaf-US.php) .9-1.8% of the US population. (It’s a weak estimate because there’s no info on how many of those people benefit from hearing aids.) They also state that 50% of that population are over 64, meaning that for the category we are concerned with, for a first world country [I’m going to admit my privilege here; deaf people in third world countries have even bigger problems than non-waterproof hearing aids], we are .45-.9% of the population. Bear in mind that there is a strong correlation between disability and poverty/low education, please. Campaigning for better conditions requires a substantial amount of time, energy, and education/knowledge. Money doesn’t hurt either.
I also think that you vastly underestimate the degree to which the hearing aid market is driven by profits. The changes we’d all like to see *still* only cater to a small number of hearing aid users. The reason that hearing aids have gotten smaller is because the baby boomers don’t want to admit they are wearing them and were willing to pay for the high cost early models and subsidize the development.
I think it’s great that you have time and energy and the contacts to work on this problem. But you’re not winning any support by calling people who have more experience than you do “used to a lot of disadvantages and established their workarounds. If stuff gets into your routine you stop thinking about it and your conscience concentrates on other things. But in many cases I think it is resignation. “
I appreciate your comments, I guess I should work on my wording. I really don’t want to offend other hearing-impaired people. I apologize if it appears like that.
I am aware that the hearing-aid industry is driven by profit. Because of that, it might be interesting to raise our voice to governments and authorities. For example hearing aid companies might be more willing to agree on standards, if their legal regulations encourage (if not enforce) that.
And yes, I am also aware of that in third world countries, hearing-impaired or deaf people’s situation is way worse. Ideas like making the market more DYI-friendly, also have the third world in mind. I am not only thinking industry countries here.
I know that we are privileged, because still have the money to chose between a range of high-quality hearing aids, but you cannot deny that we still have problems on the job market, because hearing aids don’t fully compensate the loss. If I’m not able to change that, I would still like to educate people about that. It is a common misconception that people think “Oh, she got hearing aids, so all her problems are gone.” Especially because we are such a small fraction of the population, we should not suffer in silence.
I clearly address my wishes (or accusations) to the hearing aid industry and the authorities (as written in the beginning of my wishlist post), not the people who wear the hearing aids.
I don’t really have the time and energy to work on this problem, but I feel if I don’t speak up, I miss the chance. Yet, I get accused of people, that I did not enough (for example as feedback after my talk, “Why didn’t you hack something yourself?”). I can imagine more recreational use of my time, really. I appreciate your feedback, especially in case I don’t have enough contact to long-term hearing-impaired, but I still find it not helpful to basically be told “We are too few, let’s just stop whining.” The fact that the hearing aid manufacturers were actually quite happy about my feedback and that some of them even invited me to work with them, let me in the impression that it is not that wrong what I’m doing.