Keath Fraser's "Voice Gallery" Book

Keath has SD.

His latest book is called "The Voice Gallery - Travels with a glass throat". In here he weaves in his SD experience with a narrative about travelling through various parts of the world meeting other SD people and reflecting on our shared condition. The book has excellent reviews.

There have been previous posts about this publication - but the reason for posting about this again is that initially there were some problems in ordering a copy if you didn't live in Canada. For example, the previous on-line sales agent wanted buyers to fax copies of credit card statements as proof etc.

The book is now easier to purchase on-line with a credit card. One address that allows hassle-free purchase is http://www.amazon.ca

Enter key words like Keath Fraser when you get there.

Here is a review of the book:

Well spoken

By BRONWYN DRAINIE

Saturday, June 22, 2002

The Voice Gallery:
Travels with a Glass Throat

By Keath Fraser
Thomas Allen, 338 pages, $34.95

Memoirs of disease or disability can be very tricky things to write. Self-pity will turn readers right off, while the triumph-over-adversity approach can reek of forced boosterism. Too many medical details can make the narrative just plain dull. And then there's the ick-factor: zooming in too closely or repeatedly on mangled body parts or sharp, shiny instruments that do nasty things.

In the hands of a masterful writer, however, such a memoir can be an extraordinary voyage into unknown waters, and so it is with Vancouver writer Keath Fraser's latest book. It's eccentric in subject matter and quixotic in approach, but travelling with a mind as interesting as Fraser's is so engaging that most readers wouldn't think of abandoning ship.

He begins with a moment of high drama. Lying in bed beside his wife of 23 years, Fraser hears "a gagging sound, a small splashing of limbs, then silence." His wife is comatose, perhaps dead, and he can't call for help. It's their eight-year-old son who ends up calling 911. Fraser suffers from a strangled, broken voice that he cannot control, and in those initial seconds of panic, he fears that he'll be forced to speak at his wife's funeral. His honesty about having such a shameful thought sets the tone for the whole memoir.

His wife recovers from her grand mal seizure, and in passing, her neurologist diagnoses Fraser's voice problem as laryngeal dystonia, a mechanical misfiring of the vocal cords, and not, as Fraser has believed all his life, a psychological aberration. What's more, although it can't be cured, there is a treatment for it, an injection every three or four months of a deadly poison called Botox, directly into the throat. When this treatment works for him, Fraser is so enthralled with the difference it makes to his relationship with the world that he decides to set out around the globe in search of other sufferers from this rare condition. He wants to answer the deceptively simple question: "What does it mean to have a voice?"

The vocally challenged he meets -- in Australia, New Zealand, South Africa, India, Sri Lanka, England, Ireland and the United States -- have sad tales to tell. All have had to give up jobs they enjoyed: acting, teaching, occupational therapy, real-estate sales, preaching Sunday sermons, newsreading. Many seem to have suffered abuse, violent accidents or the loss of loved ones close to the onset of their vocal troubles. The voicelessness we tend to speak of metaphorically in terms of women, the poor and certain ethnic groups is played out in flesh and blood in the people Fraser finds and gently draws out.

Fraser indulges another obsession on this round-the-world voice tour. He is crazy about glasshouses, those ornate, improbable, Victorian structures and their modern descendents, filled with plants and ozone and the wonderful smell of half-wet earth. As a fiction writer, he has a field day with the symbolic interplay between the artifice of greenhouses and the artifice of his Botox injections, both of which yield wonderfully rich and "natural" results.

Fraser's musings on voice are endlessly interesting. Sounding strange, he realizes, is much worse than looking strange. A black acting student from Brixton in London gets stopped by the police, but when he speaks to them using R.P. (Received Pronunciation), they let him go right away. The myth of the Tower of Babel -- that all languages originally came from one -- is fundamentally wrong and backwards, he says. We probably started with thousands of individual ways of speaking, which are gradually being winnowed down to very few, with English triumphant. He asks good questions: Why do people shout into cell phones? Why can't you tell a person's age from his or her telephone voice?

Sometimes Fraser pushes the importance of voice too far, for example when he avers that you can't have the political concept of free speech without first having physical speech. But he ends the book with a visit to a deaf and mute school for poor children in Udaipur, India, and learns that they are literate, numerate and learning useful trades. If they could hear and speak, they'd be on the streets. "By exploiting their voicelessness," he writes, "they [are] making themselves whole."

Through this highly original journey and book, Fraser has made himself whole as well, no matter how his voice sounds today -- or tomorrow.
Contributing reviewer Bronwyn Drainie is a Toronto-based writer and broadcaster.

One of the diagnostic criteria for autism includes "delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)", and yet, it seems that autistics, and others with cognitively based communication disorders are the ones who make MORE of an effort to get around their difficulties with using speech than do the majority of those with SD that I've seen or heard about, who are at least in theory,(though I can't possibly be the only multiply disabled person with SD, or even on this board)otherwise neurologically normal/cognitively intact. One would think that non-autistics, who in general who have a greater desire, or at the very least, a greater ABILITY to connect with other people in a social manner, would have MORE motivation/drive to compensate for tehir difficulties communicating not less, but that doesnt' seem to be what I routinely hear. I'm baffled.

Just generally, I am UTTERLY confused at this concept of identity being related to the posession of a (working) voice, which he elaborates on to the point of ... well, it's the 'beating a dead horse' thing... and unfortuantely, I can only become MORE confused because any previous attempts at getting someone to explain this to me (both from people here and elsewhere) has resulted in a resounding and deafening SILENCE. I don't know if this is because people are insulted or offended by my asking or my lack of understanding, or are incredulous that someone could possibly NOT understand the concept, and therefore aren't able to CONCEIVE of there being an explanation, never mind how to communicate it. (a combination of my lack of social understanding/awareness, and inability to receive meaning from implied information provide this conundrum, and often just these responses from people.)

So I end up isolated and frustrated once again, not knowing how to get an answer, or to stop railing against the concepts I don't understand 'cause no one will answer me, and the responses I do get are filled with hostility because they assume I'm being insensitive instead of clueless and asking for clarification.

The more I read, both online, and in this book, the more I'm beginning to wonder, and perhaps maybe even conclude, that it must be an autistic /developmental communication disorder thing that is the root of this difference between tying one's identity in with something as insubstantial and transient as one's voice, because I can't come up with any other explanation. Particularly if this author's declaration that the link between identity and voice begins in infancy has any truth to it or not. (it's too new a concept for me to have evaluated yet, but it's a very strange one... and if it is true, than it is a basic difference between me and the alien creatures I've been thrust among - nondisabled, and on a broader scope, non-autistic people, otherwise disabled or not.

"Just generally, I am UTTERLY confused at this concept of identity being related to the posession of a (working) voice, which he elaborates on to the point of ..."

That may be Keath Fraser's concept of "identity". Other people may have other ideas. As for me, the concept of "identity" is mind boggling.

This is why (as I posted when I first found this board) I don't understand the attitude of "my life is over because my voice won't work, and I can't possibly have any sort of life ever again; there is no way I can compensate for this, and I can't ever do anything ever again." I have asked people who do feel this way to explain it to me, but nobody has. (and some people have stopped talking to me since I said that too.)

For me, my voice is only one of many disabilities I have, most of the others much more problematic than simply not being able to reliably use my voice, or even like using my voice to communicate, and so finding a way to compensate, and other ways to communicate is a mtter of cousre, and I have LESS desire to communicate than most people, and had to basically have it driven into my skill that communication is a good thing, and something I should attempt to do, so it is VERY confusing to see other people who are supposed to be more socially driven and REQUIRE interaction with other people to a large degree NOT try to compensate for their difficulties with verbal communication, and NOT trying to use other methods to communicate and interact with people at large. one of those (million) things I guess I'll never understand about people that everyone else seems to take for granted.

As for the notion of identity itself, how come you find this mind boggling? Email me privately, as I'm sure most people here probably aren't interested in this rather off-topic concept. (then again, maybe they SHOULD be, and then they'd be less distressed/realize the other things that make up one's identity, I don't know.)

What I have been amazed to learn is that I don't actually feel "less than" myself -- but I think I expected to, at first. I'm an educator, and for me, that's a deeply felt calling, something that really is part of who I am, not just something I do, and something that gives a tremendous sense of meaning and fulfillment to my life. When I realized that I had lost my "teacher voice" (and the stamina to interact verbally all day long) I did mourn for a time -- but it really wasn't that long (maybe two weeks?). Then I went into high gear to learn all I could about this new aspect of my functioning that would impact the rest of my life. I've faced the fact that there are some things that may never be part of my normal activities again -- but there are a lot of ways still open to me to teach, to help prepare new teachers (what I currently do), and to contribute to improving learning for kids in a ton of ways that may be different from what I've done previously, but aren't a total shift of focus. And I've already learned such a lot that I would only have been able to learn by going through this change in the nature of my voice. I wish I didn't have SD, and the 10 days of nearly normal voice I had after my 2nd Botox shot were a tremendous lift to my spirits. But I can't waste time pining. I'm hopeful for a future, eventual cure/fix (not a treatment) that I will live to see and experience. I feel tremendously buoyed by family, friends, colleagues, and faith. I know I am greatly blessed in having a less severe case than many, many folks on the BBd and elsewhere -- and my condition may change over time, too. What I guess is relevant to what you brought up is that I have found I am, emphatically, still ME. I can't interact with people in all the ways I have done for half a century, but I can, in fact, interact. I don't have the voice I had, but I have a voice. And, since part of my family had a lot of contact with the deaf community, I have known all my life that lots of people communicate without using their larynxes.

Each of us has a unique perspective, and the way our particular versions of SD interact with the other components of our lives and physical conditions leads to different overall impacts. I think I can only try to understand what it must be like in another person's skin, but can't really grasp what that full experience would be like or what I would be like if that's what my lot in life had included.

This I can understand. It is always a good thing when a person's job/career is something they like doing, and feel they should or need to be doing... and I can understand how something like that can become part of who one is; I think a lot of people begin to identify themselves by what they do (which sometimes is real confusing, and makes as little sense as anything else, but sometimes, when it's something like you describe, then it makes sense.)

I'm impressed that you switched gears so fast. Most people, even when they do make such a switch take longer to do so. I can totally relate to what you're saying here, especially with everything that has happened to me in the last few years (most of which is NOT related to SD -for me it's AD, also respiratory.) -which I've commented on here before... A lot of it sucks, and I wish either had not happened, or wouldn't happen, but at the same time, I realize it's almost to be expected with my brain, and also with the way my life's gone, (and it's why my favourite line currently is my .sig file for my email: "And though my life is changing fast, who I am is who I want to be." from Reba's "I'm a Survivor". ) and I keep striving to do my best to adapt to it and make the best of it.

Of course, I haven't done this by myself, although at least some of it I probably would've anyways, but still... one of my doctors (as I've also mentioned before) in particular has been a main force in keeping me directed this way, and focusing on what I CAN do rather than what I may have lost or maybe figure I shouldn't have lost, or...whatever. That wastes too much time and energy.

I agree that we can't entirely understand what anyone else experiences, but I always try to find out was much as possible, to the extent I can understand it, but of course, that's only possible when people will try to explain it to you. No matter how much one may try to understand someone else, it won't work if the other side isn't equally as responsive.

Thanks for the response.

The statement was from pg. 107: "Having a voice, she instinctively knew, made her human, who she she was". And unfortuntaely, he wasn't speaking metaphorically, either; that I could handle, but as the preceeding sentence showed, he meant this literally: "I was moved by her passion to speak,regardless of her claim to have given up 'vocal life'. One would think that given that he felt like he was a voiceless person for most of his life, he would realize how degrading and rude saying that having a voice is what makes one human, never mind saying that this was something people instictively know.

Anyways, after only a few hours of sleep, I found myself awake, and pondering on how much of my identity has always been invested in being NOT verbal (that is, the only reason I learned to speak in the first place was because I was forced to at age 3, and had become convinced it was futile before age 6, but was, by then,trapped in it's use, and it would've been dangerous for me to have given it up. Even so, I was almost 18 before using it communicatively.), and how even though most of the reason so much of my identity was bound up in not being verbal was because it was and is so adamantly valued and demanded in the world in general, it was possible that if I have put so much of my identity in being nonverbal, then perhaps it's possible that someone else could put just as much of their identity into being verbal.

...And just my luck, despite having only a few hours sleep, my brain insisted upon expanding upon this idea until I had to get up and writte it down in and email for some friends, and then tell my main support person (my autism specialist), and then I thought I should comment on it here as well, and see if I'm actually on the right track with this train of thought or not.

I got thinking about how much of my identity was formed in the first place (at least once I started to express it and have the words for it and stuff...) in negative terms; in terms of what I did NOT have or possess or feel, compared to other people (I think this is a common thing with disabilities given the current climate and minority status of disabled people). I DID NOT naturally use speech, I DID NOT communicate with it, I DID NOT desire social interaction, or know how to do it naturally, like everybody else did, I DID NOT... enjoy interaction, or verbal communication, I DID NOT... understand most things people took for granted, I DID NOT....

And considering that sound as a medium of communication never made any sense to me...(probably due to my auditory processing disorder), combined with the ineffectiveness, unreliability, and just general painfulness of using my voice,(gee, most of this sounds like
results of SD, although environmental factors, and again processing problems due to Sensory Integration Dysfunction also undoubtedly played a part), it never became something that I wanted any part of. ...And therefore, not only didn't become something I attached any meaning, or sense of self to, but it became something that I VEHEMENTLY DID NOT attach any amount of myself to!!!

Maybe it's during the period of language development that most people develop this sense of identity linkage to voice... their method of communicating, and interacting with the outside world... their link to the social world of other people, which they are so dependant upon.... People being social animals and all...(although I still can't figure out why they wouldn't make other attempts to accomodate their need for communication in a non-standard manner. .... Then again, perhaps, given the need for 'fitting in' and conformity most people feel so strongly, maybe it's not so strange, Although I still have a hard time understanding how, given their need for socialization,this fear could override some EVENTUAL means of at least attempting some other method of communication...at least with some people who have more incentive to interact with them, or something... But then agian, this is an outsider's view, so maybe I'm missing something here. (in fact, I can almost guarantee that I am, since human social interactions baffle me no end, and I only figured out why anyone would want to do this to begin with a few years ago....)

But yeah, considering how much of my identity has been involved in NOT speaking, I suppose it's easier at least, if still not very easy, to turn that around, and see how it's possible that other people could attach as much of their identity on their USING their speech. ...
Maybe. (still not sure of this, but since it woke me up after only about 3 1/2 hours of sleep, there must be something to it.)

...the other thing that seems very weird/unusual/ interesting to me is how much the majority of the reasons I hated speech and considered it the enemy were because of things likely related to SD... crappy coordination, too much effort to get it to work, extreme exhaustion and pain involved in using it, and the general unreliableness of getting my vocal cords to cooperate with me. Of course, there were other reasons too, which were a result of a brain not wired to think in words, much less in sound, and the even greater difficulty of coordinating everyhting so that thought would get translated into words, and then sound, and then figuring out the coordination to transform all THAT into muscle and motor movements, and then actually executing it. (and it's only in the last several years also that I came to realize the reason this was so difficult was related to the Sensory Integration Dysfunction, and resultant crappy motor planning and difficulty handling more than one thing at a time.

Hmmm....

So am I totally off base here, or does this make sense to anyone else but me?