Wordless Wonder

[arkallen]

I simply will not speak to bus drivers any more, not a word!

More accurately, I cannot speak to bus drivers any more. Instead, I have a small deck of laminated cards on which I have printed courteous requests for tickets and the stops where I wish to disembark. For ten days now I have been embarking in mute silence. It feels eerie, surreal; and I can’t quite believe that I am actually doing it. I feel like a researcher in a social experiment, launched on an unsuspecting world to discover how people respond to the speech-impaired. Of my several printed cards, the one that yields the most spectacular response from the public is this one:



"Sorry, my voice is no good"

This brief message is the catalyst for some extraordinary reactions. For example, this week I have met:

The Sergeant Major. This is the bus driver who helps by SPEAKING IN A LOUD, CLEAR VOICE. Not only did he raise his voice, but he slowed it down as well; leaning in towards me, with his chops pushed out in a creepy, exaggerated sort of way, presumably to help with my lip-reading. What is going on here? It’s my voice sir, not my ears!

The Teacher. The driver who reads my cards out loud. Maybe he reads everything out loud? Maybe he’s speaking for both of us? Maybe he feels the whole bus should share in the moment?

The Padre. This bus driver snapped immediately into counsellor mode, going to lengths to reassure me. “That’s OK, don’t you worry”. No mate, this is not OK at all!

The Simpleton. Then there was the driver who decided that my problems were actually of grammatical origin, and so he helpfully dropped all the conjunctions from his sentences, as in: “You go town?” If one was the type to get offended, one might.

The Gossip. Then, and I really liked this one, there was the driver who followed me down the aisle of the bus to find out more. “Now what have you done to yourself? Where’s your voice gone? Aren’t you going to talk to me today?” All I could do was smile, shrug, and produce my little card once more.

Marcel Marceau. There was a member of the public who had some excellent tricks up his sleeve. I Managed to get hung up (again!) on one of those tricky little ramps from road to footpath. If they are too steep, and if you hit them too slow, the mid-wheel drive ends up spinning in mid air. Soon enough a car pulled up and a Gent sprang out with loads of advice and reassurance – until I flashed my card for his benefit. Immediately, immediately, this fellow clammed his mouth shut and began to convey his plans to help me through a combination of mime and some breed of home-made sign language that was quite beyond me. I felt like suggesting he get a little set of cards to help with his speech difficulties.

The Madonna (with child). Then there was the clerk at the motor registry. I had quite a bit to get through, transferring the registration for our new wheelchair vehicle from one state to another, with engineer’s certificates and statutory declarations to be sighted and signed. For all but a few words I relied on my little cards and on messages typed into my phone, and this seemed to do the trick. Until we had to go out to the car park to check the engine number. She held my hand! She held my hand!

What is going on here? My awkwardness seems contagious; spreading in the way a yawn engulfs a room. Over the last couple of years I’ve become acclimatised to people’s reaction to disability, and most people are terrific. But what is it with silence that throws people so out of kilter? Is it compassion, or embarrassment, or sympathy, or fear, or confusion, or something more fundamental, more archetypal? My instinct is that speech is so elemental to humanity that its absence is disorienting. To rob a human of their voice is inhumane. I think voicelessness is provocative also, drawing out of people an unexpected response that is poignant (if alarming!) in its eagerness to help and its desire to bond. The creation story holds that the Almighty used words alone to make our world; before the self-centredness of man wreaked its havoc, epitomised finally in the Tower of Babel where the unity of culture and language was confused and lost. Babel comes to mind whenever I board a bus!

It’s early days, but I think the fear of becoming mute is the dread of isolation. And so I feel moved, deeply touched, by the members of the human family on the busses and around my town who reach out to prevent that from happening. Inept and inappropriate perhaps, but I feel the love! And I am grateful.

 

[abbas child]

I imagine this post will get a lot of response by those whose voice is totally gone. Your descriptions are funny, yet startling to me, whose voice just alternates between high pitched (rested) or around a whisper. I notice how people will ask questions from a different room... or ask trivial things when I want this voice to be kept and used for what matters.

Thank you, Roderick. You do show appreciation for the love--the meaning behind the weird behavior.

 

[Bad Balance]

As I continue down our path I realize that I am surrounded by thoughtful sensitive people. I appreciate the patience of those that are a bit further along. Sometimes I marvel at their lack of impatience with my naievity.

Thanks for sharing your insights and your humor Roderick.

 

[KeeKer]

I'm sorry, but I laughed at many of your descriptions. People can react so weirdly! Just must feel so awful to have people do that to you!

 

[BarryG]

Roderick, thank you so much for your perfect descriptions of the reaction of so many people to the speechless. As someone who hasn't spoken a word in a year and a half I can surely relate. I think because speech is so "normal", everyone over the age of two can talk, people have no concept of what it means when someone cannot speak. They simply cannot imagine not being able to talk.

At the same time as I am thinking to myself "Why are these people so clueless?" (not their fault, they just have no experience with someone who cannot talk and if they have any experience it is with a deaf person) I am feeling very jealous that they can talk. Why cant I have the fast, easy back and forth conversation that I used to have? My speech devices allow me to communicate but not really converse and I really miss that.

You are so right when you say that speech is such an elemental part of who we are and how we relate to others. Like able bodied people who spend a day in a wheelchair I think that able speeched people should spend a day not talking, it would certainly make us better understood.

 

[ccurths]

Wow that's how I feel! The reactions vary, most people are nice but assume I'm deaf! I think partly it's because it's rare to find someone with this disability and some ppl with this don't go out at all. You put into words what I experience every day. My husband does the talking for me when were together and I have an iPhone with speak it, but it's not the same as using my own speech. I haven't lost my vocal cords but my tongue and palate are affected so far, you can't make words without a tongue! I used to take eating and talking for granted, most people do. They do it without thinking about it. Anyway great post, thank you!

 

[joelc]

I have not experienced any of things. I have found people to be great! But when I lost my voice I was already in a wheelchair and had a trache and vent so people did not expect my to be able to talk and my wife was always with me.

Each of our experiences are certainly different.

Thanks for sharing yours.

 

[Pepper]

Roderick, thank you for taking the time to share your experiences and in such colorful fashion. I do enjoy reading the characterization of the different bus drivers.

I would say the dominant emotion aroused is compassion.

 

[sadandconfused]

Some people are just morons. I worked before with people who were disabled and let me tell you they were the best. Very smart and caring. In the world with "normal" people I have learn they get on my nervous. I can't deal with some people.
I'm sorry you were treated like that and for anyone else that gets treated wrong.

 

[Jellycat]

Roderick, as ever you are gifted with words and compassion. My personal pet hates on this issue are two; the person who along with raising their voice, assumes the speechless one before them is stupid, and people who talk over or 'forget' the person is there at all. Very painful.

 

[arkallen]

I imagine this post will get a lot of response by those whose voice is totally gone. Your descriptions are funny, yet startling to me, whose voice just alternates between high pitched (rested) or around a whisper. I notice how people will ask questions from a different room... or ask trivial things when I want this voice to be kept and used for what matters.

Thank you, Roderick. You do show appreciation for the love--the meaning behind the weird behavior.

Yes Ann! Those questions from another room! How painful is that? And what about people who have the funny habit of asking you to confirm again the very thing you just decided, sometimes two or three times?

 

[arkallen]

Some people are just morons. I worked before with people who were disabled and let me tell you they were the best. Very smart and caring. In the world with "normal" people I have learn they get on my nervous. I can't deal with some people.
I'm sorry you were treated like that and for anyone else that gets treated wrong.

It is awful and painful to be treated wrong, I agree. But, I feel as though it's very, very rare for someone to do so deliberatley. I reckon that most folks, almost all folks, really do care and try their best; but they just arent equipped for the task.

And I do hope that you are being treated well!

 

[LizT]

Id say make more cards. Cute smart ass ones to flash when you are with any of the folks youve mentioned.
like for the srg- it could simply say "not deaf"...
You get the point.
Seriously though, I applaud you.
I dont know what I would do if i couldnt talk anymore.
Some say it might do me some good...

 

[Alyoop]

I sat next to a last at an MND Christmas party, she had pseudo bulbar palsy and was in a wheelchair. Her speech was gone and she could not close her mouth. On her chest was a laminated sign reading. I cannot speak. That does not mean I am deaf and I certainly am not dumb.
This was the first non speaking person with MND that I had had any dealings with. Thanks to her amusing sign and thanks to this forum increasing my understanding of the difficulties of the " speechless". I was able to just get straight in asking her about her unusual tatoos. I would have felt shy if I had not had you all to open my mind. I would have walked on eggshells and quite frankly I do not know why. Maybe other people just say dumb things because they have never been confronted with someone who has lost there speech. I have 2 deaf sister in laws so I had to try hard to remember that I did not need to speak slowly facing the person.
So yet again this forum has expanded my world and made me a better and more understanding human.
Thanks Roderick
Aly

 

[arkallen]

So yet again this forum has expanded my world and made me a better and more understanding human.
Aly

Aly,
I'm curious, how did the woman communicate to answer your questions? And, of course, what were the tatoos?

There is so much to learn about one another isn't there, especially once you move away from the 'normal' that we spend so much of life learning to relate to.