My address to the National Federation of the Blind’s DeafBlind Division at the 2024 National Convention

Here is the text of my address to the NFB’s DeafBlind division which I delivered earlier in the week.

 

Living the life we want as a blind person wearing hearing aids

Delivered to the National Federation of the Blind DeafBlind Division on 5 July 2024 by Jonathan Mosen MNZM.

 

It is a pleasure and an honour to be here today              and to have been asked to address this meeting of the Division. I personally find NFB meetings a rejuvenating occasion. We find solidarity, we can share our perspectives, renew our determination to assert our worth and our place in the world, and identify areas where we must continue our commitment to advocacy so we can live the life we want.

I’m proud to say that the topic of hearing aids, accessories and technological intersectionality is something which comes up on my podcast, Living Blindfully, regularly. A couple of months ago, I produced demos of some of the new hearing technology I am using, and they have been popular. Living Blindfully has listeners in 113 countries, and is a way for us to discuss a range of issues about living our best life. All of our episodes are transcribed using a human transcriber, so the transcriptions are accurate, well-formatted, and easy to read. It is of vital importance to me that DeafBlind people are not left out of the Living Blindfully global conversation. We’re excluded from the conversation far too often. So I am delighted that we receive contribution from our DeafBlind listeners and that issues of importance to DeafBlind people are discussed.

I have been wearing hearing aids for over 30 years now. The cause of my blindness is a congenital condition called Norrie’s Disease, and this comes bundled with the additional bonus of a degenerative hearing impairment absolutely free. Some people with Norrie’s eventually function best with cochlea implants. At this stage I am working with behind the ear hearing aids having started my hearing aid journey with in-the-ear hearing aids. I cannot prove cause and effect, and I have no medical background, but what I can tell you is that around a decade ago, I got serious about adopting a ketogenic lifestyle, in other words a low carb, high fat form of eating. Since adopting this lifestyle, my hearing has remained stable, there has been no significant deterioration.

One of the characteristics of Norrie’s is that it can result in rapid and temporary loss of hearing beyond the permanent loss. It’s almost as if someone flicks a switch and one of my ears just gets switched off for a while. Normally, hearing starts to come back within 48 to 72 hours. I can feel the loss coming on and it takes a few minutes to complete. Once it starts, there’s nothing that can be done to stop it, and if I’m out travelling, the best thing I can do is take measures as quickly as possible to get to a place of safety. The most interesting place I’ve had one of these episodes start was when I was with the youngest of my four children at an amusement park overseas when we were on a much-planned and anticipated trip of a lifetime.

Even though I have worn hearing aids for 30 years, speaking to the DeafBlind Division of the National Federation of the Blind is not something I would once have ever seen myself doing. I didn’t used to disclose my hearing impairment willingly. I’m in a different place now and it’s difficult for me to take myself back to the way I used to think. But I think the major reason for this was that I felt like I faced enough discrimination as a blind person without adding hearing impairment into the mix. But there were times when I struggled. Let me be clear, there are still times when I struggle.

I’ve worked for three well-known assistive technology companies, HumanWare, Freedom Scientific and Aira. I’d spent a lot of time in the exhibit hall. Now all of us in this room know what a challenging audio environment that is. It’s noisy, there’s plenty of technology making interesting sounds, and there are people keen to give you their pitch about what they are selling. You obviously very much want to hear that pitch. If you’re on the other side of the table, and people are asking you questions about the technology and you’re spending several days in that environment, it can be difficult, stressful, and frankly, profoundly upsetting.

I could have done it differently. Even then, there were FM systems, remote microphones and I could have handed one to the person I was talking with so we could carry on a conversation. But I didn’t want to disclose. One of the results of this was that some people thought I was aloof, which is sad because as anyone who knows me will tell you, get me in an environment where I can function well with my hearing and I’m a very sociable person. But in the absence of any other explanation, people would conclude that I was distant, not very engaging, even a bit rude, and meeting me was a bit of a disappointment.

As I got older, I became more comfortable in my own skin, and accepting that people can just take me as I am or not at all. When I started disclosing via my blog and podcast that I used hearing aids, many people were very surprised. I started saying to the companies I worked for, “listen, if you’re operating a suite, send me there, not to the booth at the noisy exhibit hall. I can troubleshoot more complex problems from there, I’ll be of more value to the company and the customer.” I started being my authentic self.

I have just concluded five years as Chief Executive of a national employment service for disabled people in New Zealand. I wouldn’t have been as effective in that job if I hadn’t become comfortable with disclosing my hearing impairment and requesting the accommodations I needed to be at my best. A big step for me was using the remote microphone I was using at the time, the Phonak Roger Pen, in a much more visible way. In very large meetings of staff around the country, I asked people to take the Roger Pen when they wanted to talk. I explained that it was because as Chief Executive, I genuinely was interested in what they had to say and this would ensure I caught every word. I learned as a result of that request about an indigenous concept called the talking stick. When the talking stick was passed around a gathering, and you were given the stick, it was your turn to talk. My Chief Operating Officer explained the concept to all the staff and said, “OK, this is our talking stick. When you have it in your hand, you know it’s your turn to talk”.

I count myself incredibly fortunate in that I have been interested in radio and audio all my life. I’ve had a career in commercial broadcasting, have established several Internet radio initiatives, and am a podcaster. I know a lot about technology and my experience as a product manager means that I understand how the sausage is made. So I’ve come to realise that I can use this knowledge not just to optimise my own hearing opportunities, but to hopefully be an advocate and of assistance to others. The combination of my skills in tech, audio and advocacy means that I am one of the best, and potentially one of the worst, audiology patients. I’m a patient good audiologists like, because I know what I want, I’m not prepared to settle for second best because as a blind person, my hearing is critical. I’m one of the worst patients for exactly the same reasons. I know what I want, I’m not prepared to settle for second best because as a blind person, my hearing is critical. When I believe I can push the technology further, I’m not afraid to be a nuisance.

I don’t have a lot of knowledge of the complex world of medical insurance in the United States, but in New Zealand where I’m from, we often see Government-run funding entities seek to talk a blind person down to cheaper and less effective forms of technology. We must stand up against this, and where necessary, enlist the assistance of advocates to help us explain to these funders the unreasonable, and indeed inhumane, sacrifices they’re asking us to make when we are being deprived of the tools to be all we can be. For a blind person who uses hearing aids, when funders deprive us of the best solution, it is a statement that we aren’t worthy of participating in society to our maximum potential. It’s a statement that our independence and even our personal safety when travelling is worth sacrificing for a few lousy bucks, and it must not stand.

My hearing is far too important to me, and I have enough tenacity to keep pushing my technology. Because of this, I often say to people that besides my relationship with my wife Bonnie and my family, my relationship with my audiologist is one of the most important in my life. For those of us who are blind and wear hearing aids, it’s important that we set exacting, clear standards when it comes to the audiologist we choose. The world of hearing care is highly medicalised, but in the end, we are the customer. Being the customer doesn’t necessarily mean we are the purchaser, but we are still entitled to satisfaction and excellent service.

A  good audiologist will appreciate that you cannot fit a set of hearing aids for a blind person in the same way that you’d fit a set of hearing aids for a sighted person. We may need to be prepared to do a little educating in this regard, and a good audiologist will be willing to learn. A good audiologist will welcome the challenge. So what does that mean in practice. For most sighted people, room ambience and traffic are often considered background noise to be minimised. And indeed, when we as DeafBlind people are in a crowd, there are times when we want to be able to minimise that noise and focus on who is speaking to us as well. But at other times, traffic and background noise are critical environmental cues. Good stereo separation where possible is also helpful. For example, when you’re trying to navigate the complex environment of a blindness convention, and the elevator goes “ping”, where did that ping just come from. All good hearing aids today will offer a variety of programmes to which you can switch, using buttons on your hearing aids and increasingly via an app. AI is everywhere these days, and many hearing aids are now using a form of artificial intelligence to make decisions about the kind of environment you’re in and what you are most likely wanting to hear in the current situation, such as the person speaking in front of you. These devices are making a phenomenal number of decisions every second about your listening environment. But for those situations where you’re working in traffic and you need to be cognisant of your environment, an audiologist can set up a programme that still uses a little dynamic audio compression to ensure things don’t get painfully loud, but nevertheless applies much less filtering to your listening environment.

Getting new hearing aids often involves a complex, often bewildering series of choices. There can be many reasons why an audiologist may recommend a particular manufacturer, and not all of those reasons are necessarily in your best interests. Perhaps an audiologist is most comfortable with a particular manufacturer because they know the software for their aids inside out. Perhaps an audiologist receives an incentive for fitting certain brands, or maybe they just prefer working with a rep from one particular manufacturer.

From our point of view, there are considerations that go beyond which devices might help us hear the best, and they relate to the accessibility of the companion technology. Many higher-end hearing aids now give you a lot of control over programming the aids to suit a particular listening situation. Unfortunately, some of these apps have significant accessibility problems. We must find a way to do something about this issue. I received new hearing aids earlier this year, having had my previous model for five years. It was frustrating to me that I found myself having to rule out options I wanted to try, because I installed their demo apps from the iOS App Store and could clearly tell that I would not be able to make use of all the features I was paying for. This is simply unacceptable, and I hope that the work being done in this country on the accessibility of medical devices also applies to hearing aids. Hearing aid manufacturers simply should not be permitted to put inaccessible apps in the App Store.

The Phonak app is accessible, but it has some interesting quirks when using it with VoiceOver. Every time you make VoiceOver talk and your phone is paired with your hearing aids, the app of course switches to the Bluetooth streaming programme, knocking you out of the programme you’re trying to make. So if you want to configure your own programme for a particular environment, you’ll need either to disconnect your iPhone from the aids, which is not ideal, or use Braille without speech, so the Bluetooth streaming programme isn’t being triggered. This is an area where DeafBlind Americans really have an advantage, because this is an ideal use case for the NLS eReaders. The devices are small, so you can take the Braille display with you and use it to optimise the parameters of a programme when, for example, you’ve sat down to dinner at a restaurant. I have found the ability to customise what I’m hearing in environments like this to be incredibly helpful.

Our challenges go even deeper than app accessibility. There are hardware considerations too. Some accessories that work with hearing aids are more accessible than others. Some remote microphone solutions have a touch environment, where touching certain parts of the device determines what parts of the room will be amplified. Some don’t feature a physical on/off switch, instead opting for a pushbutton where a blind person can’t tactually determine when a device is on and when it’s off. Fortunately, I’ve found the Phonak Roger On to be a very accessible remote microphone device. It does have a physical on/off switch and a push button for changing modes, as well as an accessible app for the most part. The app lets you know battery percentage, and what mode the device is in.

On the other hand, the Phonak TV Connect, which I bought as part of my hearing upgrade this year, is suboptimal from a blind person’s point of view because there are controls on the top of the device that are completely undiscernible by touch.

I believe the matter of aids that use rechargeable batteries versus aids that use replaceable batteries also has accessibility considerations. Undeniably, this is partially a matter of personal preference and lifestyle. For example, door to door, to get from our house in Wellington New Zealand to this convention took around 28 hours of travel. You never know when an emergency may happen, and I’m personally not willing to risk my hearing aid being unavailable to me during any part of my journey because it needs a recharge. On my keyring, I carry two hearing aid batteries at all times. If I get a beep telling me I’m about to go flat, I swap out the battery and I’m good for another nine to ten days. If you don’t do gruelling travel like I do, and you don’t live in an area like I do where significant natural disasters that might cause widespread power outages are a real possibility, rechargeable hearing aids may be more viable. But it is still important that we choose models where we can be assured that they are charging when we think they are charging.

There is another accessibility issue which, in my discussions with hearing aid companies, I found took them a surprisingly long time to grasp. Many of us use some sort of remote microphone. These are multipurpose devices. When someone is holding it in a crowd, it can filter out a lot of background noise. If you place it in the centre of a table in a meeting environment, it will amplify the person speaking at the time. It’s this latter scenario that poses challenges for us. Ideally, we should make the effort to face the person speaking to us. But a lot of these remote microphones make that impossible, because the signal they send is mono. That is to say it is a single signal being sent to both hearing aids. This puts us at a considerable disadvantage. Thankfully, with the Roger On and some of the other new Roger devices, you can now make them produce a stereo signal. It’s important to make sure you place the Roger device in the middle of the table correctly, but when you do, you can now tell when someone’s speaking on your left and when someone’s speaking on your right. For this to work, you do need to be wearing Phonak aids, which have the Roger Direct receivers built-in. Now that I do, I find myself using the Roger device much more often. There is no special device to connect to my aids, I just keep the Roger device in my pocket, switch it on and it works.

As hearing aid wearers, we also need to take our blindness assistive technology into account. How are we going to work most effectively with our computer and smartphone when they are running a screen reader? Not all progress is good progress. One thing I had to give up when switching to my new hearing aids is technology called Direct Audio Input. It saddens me that more DeafBlind people didn’t know about it. Perhaps if they did, we may have been able to fight for its retention. But perhaps it is also true that, if you make careful technology selections, its benefits aren’t quite as unique as they once were. Direct Audio Input technology allowed you to run a cable from the base of each of your hearing aids that would terminate in a stereo 3.5mm plug. You could then plug your hearing aids directly into the headphone jack of any computer, talking ATM and audio device. I would use this to connect to the mixer in my studio. The big advantage of this technology was that it was completely analogue and gave 0 delay. I still work with the speech of my computer quite fast, and I turn keyboard echo off. I didn’t have to wait for the connection to wake up, it was snappy, and it just worked.

But it is now very much out of fashion. Our use cases seldom reach the desks of the product managers in these hearing aid companies. I doubt that blind people were given much, if any, thought when it was phased out. Wireless, and digital, are the future.

This leaves us with yet another challenge when choosing hearing aids. Many hearing aids now connect directly to Apple devices using the Apple Made for iPhone protocol. Performance can vary a lot, but it is possible to find hearing aids that are responsive and reliable in this environment. It is also possible to find hearing aids that do not give smooth, reliable performance with VoiceOver.

You may also want to connect to other devices wirelessly. Phonak has not adopted the MFI standard, instead opting for generic Bluetooth. I definitely notice my phone being more laggy thanks to the Bluetooth 4.2 connection between my iPhone and my new Phonak hearing aids compared with the Oticon aids I used previously which offered MFI. The upside is that most devices see my hearing aids as just another Bluetooth headset to connect to, so I can pair my hearing aids with a much wider range of devices including my laptop. Again, the Roger On device is of significant benefit here. When I connect it to any headphone jack via an adapter that plugs into its USB-C port, I can hear a tiny bit of latency, but it is very low, and quite tolerable at about 17 ms. It’s also possible for an audiologist to configure the Roger programme separately. I appreciate this because when I’m in my studio using the Roger On to work with my mixer, I want as little processing as possible.

If you don’t like the Phonak sound, other hearing aid manufacturers are also joining the low latency party, with technology based on Bluetooth 5.2. I am hoping that this will lead to many more interoperable accessories, because there’s no doubt that Phonak accessories, while good, are expensive. Open standards should bring the price of these accessories down.

An additional benefit of going to Bluetooth 5.2 is  a new technology called Auracast. Auracast will be one of the most exciting things to happen for hearing aid wearers in years. It’s going to take a while for all hearing aid manufacturers to adopt it, and for the technology to be available at critical mass. But Auracast is a way to broadcast information to hearing aid wearers. Let me give you a practical example. Many of us have already caught up with Karen and the others who are looking after the assistive listening devices. We pay our deposit, look after the device and keep it charged, and we’ll return it after the banquet. Auracast makes all that unnecessary. Instead, you’ll just subscribe to the broadcast of the Convention. When you’re in the session, clean, very low latency audio will be piped into your hearing aids, and for that matter cochlea implants, without the need to do anything else. The technology will be easy to deploy, so as long as there’s a mixer in a session, an Auracast transmitter can be connected to that mixer, making accessible sessions far easier. You will be able to use it at home as well. An auracast relay of the sound of your TV can be useful for users of hearing aids and cochlea implants, as well as Bluetooth earphones for those who don’t use hearing aids but will benefit from this technology.

The current generation of Phonak aids, the Lumity, don’t support Auracast yet, but the latest Oticon and ReSound products do. I hear a new Phonak line is imminent, and I hope they’ll also be embracing this technology.

When you receive new hearing aids, they’ll be fitted based on an audiogram that will have been taken by your audiologist, and the manufacturer’s best assessment based on their clever algorithms about how all the many parameters in the aids should be set for your particular type of hearing loss. Particularly for new hearing aid wearers, there’s no doubt that it can take the brain a while to adapt. Even for those of us who’ve been wearing hearing aids for a long time, different hearing aid manufacturers have a unique sound and it can take a while to hear optimally with any new aids. If you put a set of hearing aids in my ear, because I’m an audio guy, I can tell you which are Widex, which are Phonak, and which are Oticon by the sound of the processing. But that doesn’t mean you should walk out of an audiologist’s clinic after your first fitting with issues unresolved that you can already hear. If speech is muffled or things sound shrill in the usually optimal environment of a quiet room, you need to get adjustments there and then. If you find an audiologist who at that point won’t work with you to optimise all those parameters because they believe the manufacturer knows best, then I would fervently suggest that you urgently need a new audiologist. Those recommendations are a good baseline, but they are the best guess of a machine. They don’t hear what you are hearing, and they certainly don’t understand your needs as a DeafBlind person. I am heartened that these days it is possible for audiologists to do some helpful and innovative things, like simulate noisy environments while sitting in the clinic, and even set up remote appointments, so they can make adjustments to your aids quickly and from the comfort of your home.

Something that many people who are not hearing aid wearers don’t understand, but which we are all too well aware of, is that even when you’ve optimised your hearing aids to do the best possible job for you, there will still be tough environments. I know that I have to accept when I’ve pushed the current technology to its limits. But as a DeafBlind person, I want, and I demand, the same degree of choice as a sighted person. I don’t want to have to rule out some technology that has the potential to be lifechanging because it isn’t accessible. This is where we are stronger together. Let’s strengthen our resolve to help one another on this journey, and to insist that hearing aid manufacturers work with us as partners so inaccessible technology does not constrain our freedom. We are worthy, we deserve no less. Let’s stay strong, stand together, and we will make it happen.