This is something I struggle with, since technically I am not deaf…not completely. Although, what little hearing I do have is not usable at all.
There seems to be some misunderstanding in the two situations of being deaf-sight and deaf-blind. I will try to clarify what I can.
Being deaf-sighted is a little harder on a person, but still manageable. Being deaf-blind totally isolates a person.
I know the legal definition of “blind” includes those who have low vision. But, in my opinion, if you can see well enough to read printed you are not blind.
Myself and my husband, we are blind. Pitch black. Nothing. No print, not our son, not anything. This is why a totally blind person relies on their hearing so much. It is what they have.
A normal person with vision would not understand the things that a blind person relying on their hear, not their eyes, will figure out. For instance, traffic.
The way a blind person knows it is ok to cross the street is either to listen for an “all clear” when it’s totally silent, or listen for the parallel traffic to go. When they go, you do too. You do wait a few seconds to make sure they are not turning in front of you, but then once you hear them go straight, you cross the street safely.
All of a sudden, a blind person who has come to rely on hearing, loses it. No phone conversations, no music, no audio books, no concerts, no talking during dinner, silence. The only time deaf-blind knows anything is when someone touches them and tells them.
Then comes the communication issues. Deaf-sighted can carry around a small notepad, or notebook and pen, which people can write messages to them to let them know what they are saying. But a deaf-blind person can not do this because they have no way of reading the message that was written.
If the deaf-blind person is able to read “print-on-palm” that is one method. But you would be surprised at how many people will walk off without answering you, or don’t want to take the time to do it. This method is simple where the deaf-blind person hold their hand out flat, and the other person uses their finger as a pencil and draws the letter in the deaf-blind person’s palm. Some people write too small. Some people write too fast. Sometimes the deaf-blind person simple can’t grasp the shape of the print letter.
Even though I know print, and can write just fine, I have a lot of trouble with print on palm. It takes me a long time to understand it. So, it is not a reliable form of communication for me, and many others.
Not a lot of the general public can sign, even finger spell. There is what they call the manual alphabet, but you would have to explain to the person how to do it, and there again. They don’t want to take the time to learn it, or even both with telling you what they started to in the first place. What’s a deaf-blind person to do for communication?
Well, Human Ware an assistive technology company, has developed a deaf blind communicator. This allows TTY access, Face-to-face communication, and SMS text messaging. It opens up a whole world to the deaf-blind person. They aren’t so isolated anymore. They feel just a little normal.
With the face-to-face communication, you hand a cell phone with a qwerty keypad to the other person. They type their message and it is then send to your device which you can then read in braille. The problem with technology, especially this one, is that many def-blind people do not have access to it. It is very expensive.
Unless the person can get funding for the technology, or can afford it on their own, they do not get the luxury of “the easy” way.
So, see? There’s a major difference here. Being just blind can manage. Being just deaf can manage. It’s when you have not only one, but t two sensory losses that makes it nearly impossible to manage.
by John, on 11.29.09 @ 7:48 pm
Hello from the deep south of Ireland, Holly,
An excellent post there and I’ll now pick up on it.
I turned 50 this year, have been totally blind and hearing-impaired from birth and wear two hearing aids, which suit me fine for balance. I am aware that as we age, our hearing powers deteriorate, and this is prticularly noticeable among folk in my position. Thus, I tryto avoid noisy environs as much as possible.
I use Braille on a 24#7 basis, or in the same way as sighted people – whether hearing or deaf – use print. Thus, as is the case with anyone born blind, I would have little idea of how prit letters are shaped and so, the print-on-palm method would mean nothing to me, until I would be familiar with letter shapes, a rather unlikely scenario in my lifetime.
Okay, obviously European deafblind people use a different deafblind manual than Americans, so a universal system, such as exists in Braille, is lacking in this regard. Likewise, the deafblind communicator is primarily only available in the US and to those who either can afford it or through their state funding.
For writen communication with the public, I use a device known as a Tellatouch and sometimes my 12-cell BrailleConnect, which operates via bluetooth with my cellphone, as you call mobiles out there. No doubt, because I’ve been using Braille all my life, I am 100% at hom with it but fr anyone who either becomes blind or deafblind later, this code proves a challenge to master and is harder to become fluent in.
Most people, as you rightly say, either don’t want to or have neither the time nor inclination to learn how to communicate in the ways required for interlocution. This is why a lot of deaf-sighted folk use an interpreter at meetings or conferences, even though they are less isolated than the deafblind.
Some folk regard the Tellatouch as being dated and low-tech, but apparently when it was manufactured for the American Foundation for the Blind in the 1950’s, it was a boon to deafblind people’s lives and from what I have read, some, besides myself, still use it regularly, as there are no batteries or wires involved. This has both querty and Bralle keyboards and I usually take it with me wherever I visit and has made my life easier since acquiring one six years ago.
Another device, made in the Netherlands, is the Screen Braille Communicator, whereby a two-way conversation can be had between a hearing-sighted and deafblind person. I have not seen the SBC myself, think it just uses grade one Braille but it;’s possibly more limited than the DBC and requires batteries to operate it.
Just to let other readers know, I have bought and read your book so am fairly clued into your situation.
by hollyalonzo, on 11.29.09 @ 9:09 pm
Hi John,
I am not sure if the tella touch is made any more, or if you can even find it. I am not very sure what the deice even is. As for the SBC, a friend let me use hers. It was not helpful. Every time someone went to type on it, it would scramble and jumble the letters. I couldn’t make heads or tails out of what they were saying. My friend told me that was one of the major issues with it. When it did that, you needed to restart it.
I want to get a blu tooth braille display for my cell phone, but they are a few thousand too, which I can’t afford. So the DBC would help me in many ways. It would give me access to the outside world with my friends via Text messaging. Something I used to do all of the time. Now I have a cell phone here, collecting dust. I do take it with me when I g o out or if I am alone. It’s my safety. I may not be able to hear the person on the phone, but they can hear me if I need to call for help.
The manual alphabet is universal IF you are even aware of it. Most of the general public is not. Unless they have a family member, or a friend, that has showed it to them, they have no clue it even exists. It is not something that is taught to any old Joe. Same with braille. Only we blindies seem to know it. The sighties know what it is, and that it’s in the elevators at work, but that’s about as far as it goes.
Maybe the deaf-blind here in America don’t have as many privellages as in outher countries. I don’t know. I’ve never been anywhere else, and especially ot while I’ve been deaf-blind. I traveled a lot just being blind, but now I have to relearn everything and one important aspect is how to stay safe from the weirdos of the world.
When I could hear them in a train station or wherever, I would just keep my distance. But now, I must rely on others to tell me if there are any creepy people around me. Determined though, that’s me. I’ll figure this out, one way or another
by Carin, on 11.30.09 @ 12:13 am
Apparently the Tellatouch can be purchased from the Perkins folk if you were interested. Do a quick google search and you’ll find info.
by John, on 11.30.09 @ 7:14 am
You’re on the ball there, Carin, just as I was about to come back on this one. However, the Tellatouch may not suit everyone, as whenever I mentioned it on the deafblind techies list, it drew a heck of a lot of moaning and groaning in response from other listers, most of whom are American. The moderator, from South Africa, never heard of it, yet I bet he’d find it useful.
Like your good self, Holly, I didn’t even know of its existence until a friend in Sweden showed me one when I was out there seven years ago. The device was used in the only specialist school for the deafblind in that country.
I bought mine secondhand from a seller, who advertised his Tellatouch in the Matilda Ziegler magazine. That done, I then contacted Howe Press to see what the position was in relation to their availability. They wrote back, saying that when the American Foundation for the Blind were selling some of their assets, the Perkins organisation persauded them that there was still a need for the device and so bought the rights.
True, most people, from the deafblind to any old Joe, never heard of the Tellatouch but I think it was never promoted to its full potential. When last I checked, it retailed at about $725, from the nonprofit Howe Press.
It’s a one-cell device and requires a good tactile sense; it could actually prove a life saver. I would advise anyone try it for a few weeks before deciding whether to purchase.
I wouldn’t say blind or deafblind folk are better off in other countries outside the US of A; in fact I grew up dreaming that America was the land of liberty and opportunity! Nobody to my knowledge anyway Holly, who has commented on your blogs, is in your exact position, so all we can do is suggest. When you were hearing-blind, Braille was a real pain in the ass, wasn’t it? But for me, who has always bee hearing-impaired, it never was. And you’re right; there’s a world of a difference between hearing-blind and deafblind, there seems to be a natural trait of condescension on the former to the later, just as there is on on hearing-sighted towards hearing-blind. Now, I am not saying ALL people think thus, as there are some truly dedicated souls in this world who make it their life-s work to assist others not in their position.
Good to get your responses.
by Yvonne Foong, on 11.30.09 @ 8:46 am
Hello Holly,
If you have the option, would you prefer getting the Deafblind Communicator or would you rather stick with raising funds for the Auditory Brainstem Implant?
If you get the Deafblind Communicator with the funds you have now, you will have less for the A.B.I. but it might be worth it if the Communicator helps you a lot. But you need to make a decision.
There might be organizations willing to chip in for the Communicator but not the entire cost.
by John, on 11.30.09 @ 8:51 am
Another item I have heard of but have not physically had one in my possession, is a card known as a Brailtalk. This is said to open out like a notebook and contains theBraille alphabet with its print equivalet corresponding with each letter.
To use it, a hearing-sighted person places the blind or deafblind person’s finger on various letters when transmitting what they wish to say.
I wouldn’t vouch for its availability, still awaiting a reply from the people in Kent, England, to whom I rote with a view to purchase, but one guy in the US tells me they can behad from a company called Maxi-Aaids, but on searching their site just now, found no trace of it. Still, as its price is within a easonable range, around the $40 mark, or so I am told.
I came across the Brailtalk – and note that the word “brail” is spelled minus the second l and e – on the UK site, deafblind.com. It has come under discussion on the deafblind techies list when I was subscribed and drew more positive feedback than did the Tellatouch.
It would be great if you could somehow acquire a BrailleConnect for your cellphone, Holly, as besides texting, the device can be used for face-to-face communication in the “new notes” menu. I have conversed thus with a deaf-sighted person.
by Carin, on 11.30.09 @ 11:02 am
Thank you Yvonne for saying what I have been thinking for some time now. I knew it would likely draw ire, so I said nothing.
And John, that braille thingamabob you said sounds freakin brilliant! Me and google are going to have a meetin’.
by Carin, on 11.30.09 @ 11:20 am
There was somewhere that said the RNIB carried it, but they appear to carry it no more. But if you email them, you might be able to find out who does now.
by John, on 12.02.09 @ 6:55 am
Hiya Carin, I raised the matter of the Brailtalk on the BrailleUK list and a guy from RNIB replied, saying they now have an alphabet card, called “This Is Braille”, which isn’t as robust as the Brailtalk but does the same job as it.
And, the thingabob is a freebie! One is being shipped to me by their customer services, so I’ll let y’all know if/when it arrives within the next few days, and having tried it with a few willing souls how I find communication.
by Carin, on 12.02.09 @ 4:58 pm
Awesome! I would love to know.
by John, on 12.12.09 @ 8:04 am
Okay, I now have the RNIB Braille ’sheet’ in my possession, as it doesn’t merit the word ‘card’ to me.
Thus, as you can already tell, it’s rather delicate and on arrival through this morning’s mail in an ordinary envelope, the Braille letters were pretty flat to the touch. On applying my writing stylus to the back of them, they improved a fair deal.
The sheet measures about five inches by nine, and has three lines of Braille thereon, well-spaced out. The first line has the letters a to j, second line k to t, and third, u to z, followed by contractions, and, for, of, the. A few lines below that are numbers 6 and 160 in single-line spacing, whatever purpose they serve.
So, how does this sheet work from a deafblind point of view? Well, having briefly tried it with another party, who put my right index finger on various letters for a few words, I would say it is alright but will need to do more prctice before deciding what exactly I think of it.
All that said, I don’t think the sheet was designed with communication in mind; it was more aimed at showing a would-be learner of Louis’s code how letters are formed and if he/she has a bit of sight, to follow their print equivalents Braillewise.
I reckon a more robust card, such as the seemingly obsolete Brailtalk, can do the business.