At some time or other, most blind people will have experienced that all too familiar situation. You’re in a store, a restaurant, a bank, and the person providing you with service makes a point of speaking louder or slower. It makes sense, right? Since you can’t see, that means you’re going to have difficulty understanding.
Usually, no offence is intended. Blind people are a low incidence population, and the person providing the service is simply dealing with an unfamiliar situation.
Sometimes blind people joke about this all too common scene that is played out repeatedly, but there’s a more serious side to this. The fact is, a significant number of congenitally blind people are born with conditions that include deafness or a hearing impairment immediately, or that will see their hearing degenerate over time. Add to this the fact that the vast majority of those with a vision impairment develop it in their senior years, a time when hearing can also deteriorate as a result of the ageing process, and you have a good number of people who are dealing with impaired sight and hearing.
I was born blind, and it’s my normality. I can’t say being blind doesn’t bother me sometimes. It bothers me when I know I could just see something I’ve dropped and get right to it, rather than use alternative techniques to ultimately locate the object. But then, I’m also short, and that bothers me sometimes too when something is out of reach on a high shelf. We all have characteristics that frustrate us, and largely I view my blindness as a characteristic, not a disability. I’ve never mown anything different, and I’ve never had a desire to see. At this point in my life, being given a whole bunch of visual data that I wouldn’t know how to interpret is something that doesn’t interest me at all.
It’s not this way for everyone. I was very fortunate early in my working career to spend 18 months working in the field for the Foundation for the Blind. During that time, I met people who’s daily reality was very different. I met someone who went to sleep fully sighted, and next morning woke up totally blind. Their world was shattered. I met someone who’d survived a prisoner of war camp, but when blindness came, it broke him. I met a nun who after a lifetime of service to the God she believed in, questioned what purpose God was serving in taking sight from her in her few remaining years.
My job was to gently and patiently convince these people that the loss of one’s eyesight wasn’t a dying, it was a new beginning. Alternative ways could be found of accomplishing tasks that they thought were impossible. But as someone for whom blindness was a normality, it gave me a much needed reality check about what others experience. When I later became the Chairman of the Foundation, I was a better Chairman because of that time.
What blindness was to these wonderful people, hearing loss is to me. The condition that causes my blindness often results in a progressive hearing loss, and it seems I’m someone who won that particular lottery. For the curious, it’s called Norrie Disease, sometimes Norrie Syndrome. Some reading this post will be surprised to learn that I have a hearing impairment. For years, I never talked about it publicly. Part of being able to talk about it now is I think just part of the process of being very comfortable in my own skin these days. I am what I am and people can take me as they find me. But a bit of it is also that I know not talking about it has sometimes created the wrong impression. With past hearing aid technology, noisy environments has often been a struggle, and so I would sometimes hear second hand from people who had made a comment to someone that they’d met me, and how aloof I was. In reality, it was most likely because I was just having trouble hearing, and didn’t know how to say so.
The most famous deaf blind person of all was Helen Keller, totally deaf, and totally blind. I’m sure many blind people who have a hearing impairment are told, if Helen could do all these extraordinary things with no hearing and no sight, you’ve got nothing to complain about. That’s why my story is similar to the stories of the people experiencing sight loss later in life. Outstanding though her achievements, no sight and no hearing were Helen’s normality. What I’ve struggled to deal with is the insidious nature of the progressive hearing loss. Hearing music you’ve heard all your life, and knowing how the highs have gone, how much blander it sounds. Functioning less well in an environment where you did perfectly well before. Being less of an active parent than you want to be, because in certain environments it’s just hard to understand. You see when you’re blind, you become very reliant on your hearing. When there’s less of it over time, that changes how you function. It’s a constantly moving target, and sometimes, it’s incredibly demoralising.
Please don’t get me wrong though. This blog post isn’t a pity party. I’ve been able to pursue my dream career in broadcasting, hold down some great jobs where I’ve been able to help make life better for people, have a family and a great life. If you’re a parent of a child with Ushers or Norries or some similar condition, I don’t want you to be in any doubt that a great life is possible for your son or daughter. But the reason why I’m being so frank about my own situation, is because what I’ve done has only been possible because of my advocacy skills, not giving up until I’ve had professionals working with me who have the understanding and patience to give me the best results possible.
Recently, I obtained funding for a complete overhaul of my hearing technology. I’ve been very fortunate to be working with an audiologist who fully understands how important it is that I have the best technology available on the market today. Not only is it about being able to continue to do my work and put food on the table for my kids, but it’s a safety issue. I want to remain active, to travel, to get out and about. And don’t particularly want to end up squashed by a vehicle I didn’t hear.
Being able to hear vehicles is just one example of the challenges blind hearing aid users face when working with their audiologist. When you can see, excessive traffic sounds are generally a distraction because you can see when it’s safe to cross a street. A blind person needs a mode where they’re able to hear the directionality of the traffic, and not have the aids consider it annoying background noise that needs filtering out.
Today’s digital hearing aids are computers. They contain digital signal processors that are making many decisions every second about what is irrelevant noise, and what is material you need to hear. Those decisions can be influenced by different programs in the aid. You can expressly switch to these programs, or an automatic mode attempts to determine the program to switch to.
At the moment, I am trying the Phonak Bolero Q90 aids. Getting a hearing aid working optimally is, at least in my experience, a process that takes many sessions with an audiologist, reacting to real world situations. That said, I’ve already got a whole lot of life back. I took my partner Bonnie and my kids to the noisiest restaurant I knew of in Wellington, on the day I got the aids. Using the audio zoom feature, I was able to carry on a conversation in an environment where I previously would’ve just sat quietly, unable to participate. When Bonnie, the kids and I went bowling, I was able to enjoy the game so much more because, despite the noise, I was able to hear clearly how they were reacting, and what the score was.
I do, however, want to discuss how hard it can be to make blindness and hearing assistive technologies play nice with each other in the digital age. With the previous aids I used from Widex, I had a cable that ran from my hearing aids to a 3.5 MM cable. I’d use this to connect the aids to my iPhone, my computer, and the mixer in my studio. If I wanted to use an FM system, for example in meetings, I’d disconnect the cable and plug the FM receivers in.
Phonak now has a gadget known as ComPilot, and it’s clever. It would be reasonable to suppose that the ComPilot would be a massive improvement. There’s Bluetooth, you can connect an audio cable if needed, and the FM receiver can stay connected too. ComPilot just knows when to switch in and out of the different devices. If you get a phone call, and your iPhone is paired with the ComPilot, it just switches to the iPhone and you can manage the call using the microphone in your device. Audio from the call is piped into both ears. What’s not to like? Well, the way a blind person uses this technology is unique.
Unlike a sighted person, I’m not just getting audio when phone calls come in, or when I choose to listen to music. I’m getting audio at all times the phone is being used as it speaks to me what’s on the screen using VoiceOver.
With the Widex configuration I outlined earlier using the cable, in my main program, both the mics and the external audio source were always on. If I switched on the phone, it worked immediately. Since Bluetooth wasn’t involved, latency was excellent.
When pairing ComPilot and iPhone via Bluetooth, it introduces a noticeable lag when using VoiceOver. This makes using the virtual keyboard really quite unpleasant.