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Techno-Crutches

by In Wales Wed Mar 12th, 2008 at 04:29:53 PM EST

My life as I know it would be gone in an instant without technology. As it would be for us all for that matter, but I'm referring specifically to the techno crutches that help me function in this audio dominated society.

Sven requested an explanation of palantype in his diary on Quality of Life.  I thought it would be a good opportunity to expand on previous diaries which seem to be forming a series on Being Deaf.  So bear with me while I eat some cake and show you how my life is adapted with the help of a little technology.


In my diary, The Dawn of a New Digital Aid, I describe how the hearing aid has a number of settings. On and off, obviously. Regular setting for letting all noise in.  Filtered setting (Programme Two) for cutting out background and traffic noise and the 'T switch' for tuning into induction loops.  Such loops are used in cinemas, conferences, theatres and so on.  The idea is that the sound as fed through an audio system with output to speakers (or whatever the technobabble is) will also be fed into another system that turns it into a radio signal that is picked up by hearing aids on the T switch setting.  So I get pure feed into my hearing aid, with no background noise.  I will tell you more as I go along but many super duper things I use are based on the principle of using the T switch.

Music
Welcome to the first thing that really seriously changed my life (bar being fitted with hearing aids aged 3).  It is an induction hook for my hearing aid that I use with my MP3 player.

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It hooks around my ear and plugs into the headphone socket - wherever a headphone socket may exist. I use it with my laptop if I watch a film, or faff about on youtube (thanks, rg) but mostly with my iriver.

I've never been able to hear music properly ever in my life, until I got this thing a couple of years ago. I probably still don't hear it 'properly' compared to anyone with average hearing but I pick up a lot more. I now understand that different singers have distinctive voices, that there are separate instruments playing in the background (but don't ask me what they are), and there are tunes, not just noise.

LEP asked me once how I pick up and learn songs.  Basically I have to play them over and over again, with the lyrics in front of me, and learn the pattern, learn how the lyrics fit into the music.  That's how I bellow along in the car.  I rarely recognise songs played in clubs and just dance to the bass or beat, I don't get to follow the song and jump up and down at the right time unless somehow the acoustics are decent and not distorted through volume or covered by background noise.  

I'll never forget that moment when suddenly music was within my reach. Awesome.  I have so much to learn, to enjoy.  It's made me feel more complete.

Meetings
The next most important thing is called a Conversor.  If you go by the packaging it came in, it should make me really happy and smiley whenever I use it, because it is that great.  

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Well it is very good and it helps but it has it's downsides too.  I use it mostly in meetings, and it works with the T switch.  The longer piece that apparently looks like a mouse (I don't know what my friends are on) is the microphone.  The bit with the loop goes around my neck and has volume control.  The thing that makes this gadget the star of the show, bringing joy and freedom and a brand new life to all hard of hearing people is that it has settings that allows it to pick up everything across a 360deg radius around it or it can be used to point in the direction of the speaker, allegedly not picking up any noise around that cone targetted at the speaker.

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Clearly, when I point the Mouse of Selection at the speaker, it knows that I only wish to hear 'yap yap yap' and not anything else. Yeah, right.  

In reality I have to put up with people shuffling papers, scraping pens, tapping fingers and rings on the table, coughing loudly without giving me notice, and when there is traffic, or partying going on in the background, it doesn't filter it out. So everything becomes very, very loud and I can feel my ear vibrating to the point that I truly believe it has begun to bleed.  Due to my very poor hearing the sound has to be up loud to catch speakers who are across the room. In a quiet room, so long as I can lip read, this system helps a lot but you only need a little background noise to seep in to render the whole thing obsolete and irritating.

One quick point. Turn your fucking phone OFF.  If it is so important for you to take a call or receive a text then you shouldn't be in a meeting.  Even when the phone is silent and not receiving/sending messages or calls, it causes interference with the conversor, or any loop system.  Your desire to be IV-ed to some form of e-communication at all times does not trump my right to participate without having my head blasted to smithereens. In fairness most people are good about this when I ask but there is always one that pretends it is switched off when it isn't

Conferences
I have another system for larger meetings and conferences that connects directly to the feed coming out of a PA system and then transmits it by infra red to an infra red receiver on a loop around my neck.
Bit like this:

Fantastic system, but it is completely dependent on the quality of the PA system. if you have a meeting of 30 people and only one microphone then I'm screwed.  So conferences need podium mics, mics for panel speakers, lapel mics for people who can't stand still when they talk, and a roving mic for the audience.  Anything less than that and I may as well not be there.

And when things don't work and I get stroppy, watch out.  If you knew how often I turn up to a conference that tells me they have a loop system just to find that it doesn't work, nobody knows where it is, or there is only one microphone or some other inadequate and unfit for purpose lump of plastic, you would understand why I get really pissed off on this matter.

It matters to get it right.  Don't keep using the rare deaf person who steps in to learn your lessons because chances are, wherever they go nobody has a clue. I sometimes think that one of my purposes in life is to educate events managers on accessibility.

End of that rant. Sorry.  I finished my cake a while ago.

Now a real treat for me at a conference is palantype.  
It is, as I explained to Sven:
In Wales:

Like live subtitling for tv.  The typist has a special keypad and combinations of keys correspond to phonetics, the combinations of phonetics match to words already stored in the computer.  where they don't match you get the pure phonetics come up on the screen.

It's expensive and hard to book so I rarely have access to it but it is a massive help when it is there. I can't listen, lipread, and take notes. I often can't listen and process it into coherent thoughts in order to contribute to discussion.  Palantype helps loads and I can take notes, catch up with the text (it fills a whole projector screen), make more notes. order thoughts, have something to say. Awesome.

I wish I had this everywhere, in every meeting, at every conference.  The downside is the slight delay in catching up and not being able to watch people as they talk, but whatever method I use, I miss something, and palantype is the most complete for me.

Phones  
I have a mobile and I sms everyone half to death with it.  Mobile phone companies are crap at doing good packages for texting, they always insist on including free minutes which I can't use.  Missing a niche here guys, hello.  Disabled people have money to spend too, but we don't appreciate this being taken advantage off to rip us off.  

If I ever see that woman who sold me my current mobile contract again, I will ask her to explain how I ended up paying 30 quid more a month than I signed up for, with hidden extras including insurance I specifically requested not to have, picture messaging that she told me was included in the free text package and isn't and an 18 month contract when I was told 12.  I made it very clear I couldn't hear her properly and to write everything down for me. Care to share the commission with me? I suspect not.

Moving on.

I have a textphone.  One at home and one at work. Unfortunately almost nobody else has a textphone and have no idea How to Deal With Deaf People On The Phone.  I wrote a guide for people at work on this subject.

This is a textphone:

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Smart! I dial a prefix before the number I am calling and it calls up an operator (typetalk). when connected to the number I have phoned, the operator tells them the process. I type, the operator relays this, the person on the other ends speaks their reply, the operator relays it to me and it comes up on the screen.  

It has been a lifeline.  Really good for making appointments but a bit long winded to call anyone for a chat, a nightmare with call centres who bleat away about data protection if I even get through all the "press 1 for..." in the first place.  I've phoned the doctors to have the phone put down on me because they thought it was a joke.  People hate phoning me on the textphone at work usually because they ignore the prefix and think they have ended up with a fax line.  I have no sympathy for that when I have attempted to answer my phone to have people hang up on me due to their ignorance or laziness.

But anyway.

Around the house
Or flat, in my case.  There are various gadgets that connect to doorbells, firealarms, baby monitors and phones that send a signal to a pager that vibrates to alert me to whatever is going on that I need to attend to.  

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The one on the right is a vibrating alarm clock.  No rude jokes about this please.  It's rubbish anyway and doesn't wake me up so I use an old mobile phone just for the alarm function. I never sleep through it.

On the left is a vibrating alarm that hooks up to the fire alarm and doorbell monitor - usually.  My fire alarm is installed within the flat itself and connects throughout the building, if a fire starts elsewhere int he block. This kit in the photo comes with its own fire alarm that you stick on the ceiling and when this goes off, it alerts the pager system - but it isn't compatible with the system installed in my flat. bah.  

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The box next to the intercom is the doorbell monitor, but the intercom isn't loud enough to set it off! Luckily I hardly ever get anyone visiting who doesn't text me first but it does mean I miss the post a lot when there is a delivery.  This hassle is largely due to me being naughty and not getting around to sorting things out.  The kit was provided by social services but they've moved/killed off the social worker for deaf people so I don't know who to get hold of now.  And I'm too lazy to chase it.

The intercom itself is cool but standard for the flat. I can see who is calling on the video screen even though I can't hear them.  I hate intercoms where I get stuck in a car park or outside a building and I know it's talking at me but I can't hear a damn thing.

__________________

Well there you have my techno-crutches.  Some I can and do live without.  Some I need even though they cause me seemingly endless grief and some I can't imagine being without.  I swing between being glad and grateful that these bits of technology exist, knowing that my independence would be diminished without them, to being hugely resentful of the fact that a dead battery and no replacement renders me useless and incapable, shuts me right off from my world and traps me in another.  I do not like being dependent on technology to function properly in society.

Why do I have to make all the effort to fit in and make things easier for everybody else? Because people are so often ignorant arseholes (I'm not accusing you ETers of this). Well meaning sometimes, selfish fuckwits sometimes, or oblivious... It gets tiring and it makes me angry but it keeps me fighting - for all those other people who won't get stroppy about it like I do, who aren't empowered to challenge the status quo and who keep putting up with being marginalised... just 'making do'.  Not great quality of life when you can't fully participate in society around you.

Technology helps but it is useless when people remain ignorant or when attitudes still devalue me and my contribution and cause exclusion.  That's a big thing to me, how much am I worth?  Just as much as you.  Just as much as anyone.

Display:
For waking up, have you tried a 24-hours timer like that with a lamp?

It's a bit crude but it works fine for someone I know.

by Francois in Paris on Wed Mar 12th, 2008 at 05:39:25 PM EST
The phone is a perfect solution really.  I wouldn't trust light to wake me up when I am still tired, I am not good at getting up in the morning so I'd go burying my head under the duvet if the light went on!
by In Wales (inwales aaat eurotrib.com) on Wed Mar 12th, 2008 at 05:53:53 PM EST
[ Parent ]
You are a treasure of the planet. I don't know how you can stand us - whining and dining ;-)

You just opened a door to a new world.

You can't be me, I'm taken

by Sven Triloqvist on Wed Mar 12th, 2008 at 06:09:21 PM EST
What a nice thing to say, thanks. (I don't think I deserve that much praise though but it's appreciated). I stand you all just fine btw...
by In Wales (inwales aaat eurotrib.com) on Wed Mar 12th, 2008 at 06:38:13 PM EST
[ Parent ]
That's a real insight, thanks. I bet the general masses wouldn't know of much beyond the existence of hearing aids, and I include myself in that. With something so essential yet non-visible as deafness, ignorance must be as much about people not understanding that a need exists, nevermind what the need is.

If anybody else here has a disability, then I would love to know what they make use of.

Member of the Anti-Fabulousness League since 1987.

by Ephemera on Wed Mar 12th, 2008 at 06:45:08 PM EST
Thank you for this inside view of technology (and good manners) :-)
I only discovered lately that you had those hearing problems!

I live just next door from the school founded by l'Abbé de l'Epée for deafs and mutes, so, everyday, I cross flocks of youngsters, signing, going to school or coming out of it.
Most shops around it used to have some specialized gadgets and once I bought an alarm clock that was buzzing and vibrating the night table it was on... Soft noise for one who can hear but woke you definitely (that was before the cell phones era).
It broke down and the shop changed so I didn't find another one as I liked it (it was a Jaz brand).
Every day I think I should learn how to sign, just in cas one of those youngsters ask me something... And I also have student with hearing aids from time to time...

The following picture didn't make it to the photoblog on street art, but I'll stick it here to thank you for that diary, and because those kids wanted people to see it :-)



"What can I do, What can I write, Against the fall of Night". A.E. Housman

by margouillat (hemidactylus(dot)frenatus(at)wanadoo(dot)fr) on Wed Mar 12th, 2008 at 08:27:20 PM EST
Great picture, thanks for putting that up!
by In Wales (inwales aaat eurotrib.com) on Thu Mar 13th, 2008 at 03:11:56 AM EST
[ Parent ]
Disable proofing events and facilities seems to me to be quite a specialised area given all the combinations of disability around - wheelchair, sight, hearing, speach, allergy, sensitivity to fluorescent lights, synthetic fabrics, etc. etc.  In one sense we are virtually all disabled in one way or another but market "solutions" depend on volume and margin and thus will never happen of their own accord.  

The potential for technological aids/safeguards seems huge, but so is the public ignorance of how such disabilities are exacerbated in the social space.  The removal of the specialist social worker for deaf people seems a sad case in point.  

It seems to me we need a much more proactive Government department for the disabled with power to initiate and enforce legislation governing everything from the design of buildings to the facilities which must be generally provide in employments and public spaces - combined with an educational programmes in schools to sensitise people to the needs of others not like them.

Most of this is not rocket science, and still it doesn't seem to happen.  Having lost a eye and a good deal of vision to shingles recently I can't read the ingredients/instructions on many foodstuffs.  How basic is that?

"It's a mystery to me - the game commences, For the usual fee - plus expenses, Confidential information - it's in my diary..."

by Frank Schnittger (mail Frankschnittger at hot male dotty communists) on Thu Mar 13th, 2008 at 01:04:29 PM EST
In France, you cant' have a building permit nowadays without validating most of those points AND without provoking segregation.

To take a short example, if you have a ramp for wheelchairs, it cannot be to a lateral entrance... It must be the same as everyone uses... Or it is segregation and you don't have your permit !

These parts are validated by associations of various disabled persons, on plans for the permit, but also at the end of works, as they test inter-phone heights, lifts, signalization, desks, chairs, etc.
For lighting appliances there are rules for color spectrum, frequencies (epilepsy), directness, etc...
Even door bells have (read should have) the names and levels in braille for blind people...

These changes cost millions and weren't done because mostly of the price... Now it's law ! Still, it applies only to new or to refurbished buildings, mostly public ones !

"What can I do, What can I write, Against the fall of Night". A.E. Housman

by margouillat (hemidactylus(dot)frenatus(at)wanadoo(dot)fr) on Thu Mar 13th, 2008 at 01:20:58 PM EST
[ Parent ]
Well, on the segregation point, I'm not in a position to comment on behalf of wheelchair users.

However, having spent several years pushing a buggy around, I've seen rather a lot of side entrances.  And back entrances. And dustbins.

And I do see that segregated entrances can be rather demeaning.

by Sassafras on Thu Mar 13th, 2008 at 02:14:40 PM EST
[ Parent ]
I think there are laws like that in Italy as well. One of the problems with the new Calatrava bridge in Venice is that it has been designed without handicapped access, and lobbying groups are fighting against this. I suppose it makes sense just as a matter of principle, but it does seem a bit silly to fight over access to a bridge that seems pretty useless anyway (Piazzale Roma to the train station) with so many obstacles everywhere else in the city.
by gk (gk (gk quattro due due sette @gmail.com)) on Thu Mar 13th, 2008 at 02:22:59 PM EST
[ Parent ]
Rome wasn't built in one day... :-)
So the point is to get all what is "hard built" through those regulations, as even if it seems weird today, those accessible paths will be linked in 50 years (or more)...

But then I'm a partisan of the Segway sort of chair with the wheels that can climb a stair ! Exoskeleton techniques are much better then the wheel chair... And when you take the amount of money spent in regulation, you could "give" one of those to each who needs one !

About 3 to 5 square meters are used in each new apartment built to follow regulations for the wheelchair that's a mean 8 000€ for each flat!

"What can I do, What can I write, Against the fall of Night". A.E. Housman

by margouillat (hemidactylus(dot)frenatus(at)wanadoo(dot)fr) on Thu Mar 13th, 2008 at 02:33:42 PM EST
[ Parent ]
This makes perfect sense in most cities. But in a city where they build a new bridge every century or so, 50 years is a bit optimistic...

Apparently the city offered free use of the vaporetto (I think Line 1 at least is wheelchair-accessible) as a compromise, but was turned down. If the offer had included their use anywhere in the city, I think they were really foolish to turn it down; if the offer was just between Piazzale Roma and the train station, they were probably right, though it might have been  worth trying to negotiate something more generous instead.

by gk (gk (gk quattro due due sette @gmail.com)) on Thu Mar 13th, 2008 at 02:54:00 PM EST
[ Parent ]
gk:
I suppose it makes sense just as a matter of principle,

Well if you let the builders make an exception for this bridge now, why not the library they're building next week? Even if there's no possibility of anyone with a disability using the  bridge this should be a point over which there should be no possibility of surrender.

Any idiot can face a crisis - it's day to day living that wears you out.

by ceebs (ceebs (at) eurotrib (dot) com) on Fri Mar 14th, 2008 at 04:44:37 AM EST
[ Parent ]
Right... Besides the point is more about designing ! Designing for diasbilities, and keeping it as a sound design, complete, pleasurable, is harder then the classical "Well, they can walk!" sort of design!
When you enforce such regulations or laws, as a given, the design can get better because of the systematic integration of those constraints (just as gravity), while most times it is, still, felt as a "patching up" an otherwise "so beautiful" design!

The same point goes for "green" design, that, for yet, isn't really seen as "architecture" but more as "painted over" techniques in many cases!
Sustainable schools contests, here, are too often a "collage" of what is supposed to be "green" techniques, as a windmill, plus a wooden facade, plus solar cells, plus, plus, plus... And the final building isn't even well oriented or the wood comes from 2000 km! (In Guadeloupe, the wood comes from Guyana, goes to "Le Havre" (france) then goes back to Guadeloupe...!!!)

Sustainability is more about the people... And that part is too often forgotten, because you need to work with associations or local people, while using the latest fashionable technique will get you in a famed magazine, even if the space isn't really usable and/or re-usable in time for other functions...

This is a wonderful world <music>

"What can I do, What can I write, Against the fall of Night". A.E. Housman

by margouillat (hemidactylus(dot)frenatus(at)wanadoo(dot)fr) on Fri Mar 14th, 2008 at 05:32:48 AM EST
[ Parent ]
In one sense there is a market due to the need to be compliant with the DDA.  It requires reasonable adjustments to be made in anticipation of people who may need to use services or enter the premises.

Certainly the circles that I work in, catering for dietary requirements has improved massively in the last 3 years, so some things can get 'popular' and as such provisions will be made.

Then there are the issues relating to say deafness or sight impairments, mobility difficulties where ignorance is compounded by the small number of people who a) turn up and b) make a fuss when things aren't good enough.  

It is a vicious circle in many ways.  If I get shitty attitude off someone in a venue or shop, I am more likely to take my custom elsewhere (where this is an option) than to write a complaint after the event, even if I complain there and then.  So because I decide not to keep hassling them, they let it go.  Where I do write and complain (as I did with our Arts Centre 2 weeks ago) they can sometimes do something to address the issue.  Other times though, I've been ignored or treated as though I am causing a problem and they have no obligation to cater for my requirements eg Cardiff's Glee Club. Yes, I will name and shame them...

And there is legislation addressing access standards for buildings but I'm not seeing the enforcement.  And there are few places to go if you wanted to take a case out on someone/somewhere to prove the point.

by In Wales (inwales aaat eurotrib.com) on Thu Mar 13th, 2008 at 01:24:59 PM EST
[ Parent ]
how much am I worth?  Just as much as you.

More than me, in fact.

Well, a bit ;)

by afew (afew(a in a circle)eurotrib_dot_com) on Thu Mar 13th, 2008 at 01:21:39 PM EST
Not true!
by In Wales (inwales aaat eurotrib.com) on Thu Mar 13th, 2008 at 01:25:28 PM EST
[ Parent ]
Depends if you're being sold by weight ;-)

Any idiot can face a crisis - it's day to day living that wears you out.
by ceebs (ceebs (at) eurotrib (dot) com) on Fri Mar 14th, 2008 at 04:45:34 AM EST
[ Parent ]


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