Touching on pornography

This is a long way off topic but it’s just a thought I would like to share to lighten the mood.

I recently saw that Braille pornography is being produced for the first time. Playboy have previously produced a Braille version of their magazines in which the pictures are normal but the text is in Braille (which oddly assumes that people buy the magazine for the text…). This new idea is to produce raised images that the blind person can feel and appreciate. The mind boggles. Thankfully I’m not blind and don’t need to wonder about the effectiveness of this tactile experience.

I’m not proposing that Playboy should produce a deaf edition (although I’d be interested to hear ideas for how this might work!). But this Braille porn thing got me wondering about sexual services for deaf people and whether we are being offered a rum deal:

• Are there any dating sites specifically for deaf or disabled people?
• Are there any deaf-aware prostitutes out there? Ones that can sign, shout, or don’t mind an interpreter being present in the room? Moreover, are there deaf prostitutes and, if so, what assistance do they get from Access To Work?
• Premium-rate phone lines: Are there any people on the far end who are trained to shout, e.g. “YES! YES! YES!” rather than “Yes! Yes! Yes!” or to use words that deaf people are likely to be able to hear? The cost of calling these numbers could be double that for a hearing person, depending on whether the deaf person keeps asking for repetition. Maybe they do, maybe they don’t. But “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?”, “YES!”, “WHAT?” is getting a bit ridiculous, even for me.

Audiologists are an endangered species

The more I think about this, the more I realise that audiologists are the problem. They are blindly trying to do what is, frankly, an impossible job. When they admit to that fact and act upon it, we will start making real progress.

In the old analogue days, audiologists had just a few options at their disposal. They could choose the correct sort of hearing aid, make sure it was working (or at least doing something), and crudely adjust a couple of screws – usually to the minimum or maximum marks which means that for any hearing aid, there were only about four common programming permutations. With digital, the permutations are practically infinite.

So why’s the job impossible today? It’s impossible because the audiologist can never know exactly (or even approximately) what the patient is hearing, no matter how good the patient is with his or her verbal descriptions. Trying to describe a soundscape with words is like trying to paint the Mona Lisa with a broom. The deaf patient has to keep painting and repainting the soundscape with insufficient words to do the job. Leonardo didn’t paint by numbers so why should we have to?

What deaf people need is appropriate hearing aids, the equipment to configure them and, most importantly of all, training to use the software. If audiologists are to survive, I think that their role must change from demigod-chief-programmer status to one in which they act as trainers to deaf people. Just show us how to set up the software and what the different options are for… and then let us get on with it! Audiologists are still needed to supply and repair our hearing aids. They are still needed to support and guide us. And they are still needed to configure the hearing aids for people who, for whatever reason, cannot do the job themselves.

Audiologists are of course also wanted by those people who secretly enjoy having warm goo piped into their ears. :-)

My point is that audiologists are not needed in the current all-controlling role which is blighting countless lives. So, please evolve or go the way of the dinosaurs.

Now, where was I?

First of all, I must apologise for my absence just when things were starting to get a bit juicy. There are a few reasons why I haven’t been blogging and I suspect that readers can relate to them:

1. My personality type is not suited to blogging. I get really enthusiastic about things, persist for a while and then let them just fizzle out. To be a good blogger requires greater self-discipline and persistence than I have.
2. When I can’t hear well, I can think of nothing but how badly I can hear. It gets me down and I feel the need to get things off of my chest. When I can hear relatively easily, I appreciate it so much that I don’t spend every waking moment fretting about or dwelling on my deafness. In short, I have managed to improve my hearing aid programs and a huge weight has been eased off of my shoulders. Being released from prison probably feels much the same. I have been enjoying life so much that I have had little time for anything else.
3. So much happened in a short space of time concerning this project that I felt unable to document it in a logical sequence. I still can’t. So you will just get bits of the jigsaw puzzle here and there. You can assemble the puzzle yourself. I will try not to give you too many bits from some other jigsaw puzzle!

More posts are coming but here’s a brief summary of where I am up to:

• I spent something like 75 hours programming my hearing aids. It was a trial and error process as I learned my way around the software. There were highs and lows – progress was in both directions.
• My hearing is far better now than it has been over the last five years. My head is not in a bucket anymore. I am enjoying music and birdsong all over again. I can’t tell you quite how great that feels.
• I have a great sense of empowerment, liberation and freedom; at last I have some control over my situation.
• I’m more convinced than ever that do-it-yourself programming is the right way to go. I fully intend to make sure that I can continue programming my hearing aids into the future.
• The job still isn’t done. Programming is surprisingly exhausting and I need a break in which to gather the strength to make further adjustments.
• As well as the hardware and software, you also need to have an experimental attitude and patience. Buckets of it.
• If you’re thinking about trying to program your own hearing aids, stop wasting time! Do it! I sincerely wish that I had bought the gear five years ago and I wholeheartedly recommend the approach. It might not work for you but that’s a risk that’s probably worth taking.

Progress! And unavoidable schizophrenia...

At last I have received the HI-PRO USB interface, the leads to connect to my hearing aids, and have found the PFG_8.6b software from the internet with which to get started.

The HI-PRO interface is sold in two versions - one is serial and the other is USB. As far as I know, you can use either (and serial ones are only available used so, if you can find one, it will be cheaper). But the USB version is faster and it takes its power from the USB cable, so there is no need to worry about separate power supplies. My HI-PRO USB box has taken a convoluted route from the factory in Denmark, via the UK and USA before finally reaching me in Finland. It is made of a vile colour 1980's sort of plastic which gives it the appearance of a kids' toy. Albeit a very boring toy for very boring children.

This morning I have installed the HI-PRO software, connected up the HI-PRO interface and then installed Phonak's PFG_8.6b software which is compatible with my Valeo 311 AZ Forte hearing aids. Subsequently I have successfully downloaded my hearing aid data to the computer from the hearing aid.

I'm eager to get playing with settings but I must be methodical about it. To start with, I must save the existing data so that I can revert back to it when everything goes pear-shaped. As far as I can tell, each client can only have one set of data. So I will store the existing data under my own name. Then I will invent a new personality to save the changed data.

My first impression of the programming software is that it looks quite complicated. I didn't expect anything less. The key problem is that the software itself doesn't present a clear workflow - so it's up to me to work out what to do first. I'm quite sure that, if Phonak made a consumer version of the software, they could (or would have to...) make it much more user friendly. I'm confident that I will be able to find my way around. But if you've never used a computer before, this software is probably not for you.

Why aren’t we hearing more about this problem?

I started testing digital hearing aids about fifteen years ago and, straight off the starting blocks, I wanted to program my own hearing aids. In view of my own strong urge, I’m sure that many other people must want to do the same thing. Therefore it’s surprising and strange that no fuss has been made about this in the press. I don’t know the reason is but I do have a hunch or two…

Hearing aid wearers fall into categories, typically: mild, moderate, severe and profound.

The mild and moderate groups encompass people who can hear at least some or even most daily sounds without hearing aids – albeit at a low level. Their hearing aids only need to give moderate amplification to restore hearing to a level close to normal. Such hearing aids are relatively simple because they are doing less work than high-power aids. It follows that these hearing aids are relatively easy to program to a live-withable level. If we compare it to a car engine, it can be running badly (misfiring on all cylinders) so long as its running well enough. 

The severe and profound groups encompass people who can hear virtually no useful daily sounds without hearing aids. Their hearing aids must give massive amplification just to bring hearing up to even a moderate level of deafness – the wearer is still going to be quite deaf, isolated and find communication difficult. By default it is very difficult to fit hearing aids to the most severely deaf – not least because high amplification causes masses of hard-to-control feedback. The programme must squash the sounds of daily life into a very small space between what the wearer can hear and the threshold of pain (the latter is much the same whether you’re deaf or not). This group needs to drive their hearing aids to the max to get every last microwatt of power and performance from them. Misfiring on all cylinders is no use at all to this group. Nothing less than optimal tuning will do! So pimp my soundscape!

I would argue that the severely deaf are the group which most needs the freedom to program their own hearing aids. However, they’re also the group with the lowest confidence and self-esteem so they are also the least likely to organise themselves to make the required media fuss.

All in all, it looks like we will be last in line when it comes to self-programming when we should actually be at the head of the queue.