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Source: (consider it) Thread: Memory eternal, Alex Spourdalakis
RuthW

liberal "peace first" hankie squeezer
# 13

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quote:
Originally posted by Fineline:
I would question whether that was intended though - the message of disability activists tends to be that it's not a dreadful thing to have a disability. You adapt, you become organised at working round it. You want respect, to be treated like an equal - not pity. A lot of disability activists talk about the idea that society is what disables people - that people's attitudes disable people more than their disability does. So if people are horrified at the idea of becoming disabled, this is not surely not what most disabled activists want - it increases the 'them and us' divide.

...

Perhaps if people are reading the mention of the possibility of anyone becoming disabled as a terrible threat, this says more about their attitude than about the people saying it.

Oh, please. From what I see of disability, it's not exactly a walk in the park, so yeah, I'm not too excited about the possibility of becoming disabled. And don't give me the crap about how having a disability is all about learning to adapt and work around it, and that it only sucks because society makes it suck. My dad's life with Parkinson's is one loss after another. He has adapted again and again, and he's unbelievably stubborn about not giving things up until it's dangerous for him not to, but his life just keeps getting smaller and smaller. He gets depressed, he worries about being a burden on my mother, he feels like his life is losing its value, and he has early signs of dementia. Money certainly helps, and I'm glad that he's generally in the company of people who don't need to have their attitude toward him challenged or adjusted, but still -- it sucks, and he thinks it's dreadful.

I have thought a fair amount about what disability might mean for me, as it happens, and not in an entirely idle "what if I get hit by a truck?" kind of way. My father was diagnosed with early-onset Parkinson's, as was his mother, and early-onset Parkinson's is thought to have a strong genetic component. I've reached 50 without symptoms, and I'm pretty fucking happy about it because, yeah, some of the things my father goes through are dreadful. There's a whole thread in Hell on how much cancer sucks -- go over there are tell those folks that disabling disease is not really that dreadful.

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Porridge
Shipmate
# 15405

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I'm afraid I'm like a lot of pragmatically callous people, in rarely giving a thought to a dozen or a hundred or a million different issues until somehow, there it is in my face.

I first heard the TAB phrase only after beginning to work with people who have disabilities; perhaps that's why I react to it differently than others.

I entered this field by accident -- I was job-hunting in an entirely different line of work and answered an ad that I didn't fully understand but which sounded interesting -- and have remained within the field for lo these many years, though I've held three different jobs at three different agencies within it.

Frankly, this whole "desire to help others" motivation being discussed upthread seems, well, thin to me in speculating about what we should or shouldn't say. do and how to revent such deaths. Frankly, I think most of us have all we can handle managing our lives and/or families and/or jobs, etc.

Sure, we'll send a check (if we can afford it) to support some cause -- helping the victims of natural disasters or terrorist attacks. Some of us will even put our boots on the ground and fill sandbags or man a coffee earn or sift debris.

Our expectation, though, is that that first check puts "paid" to our obligation. Our motives often are to help put things back the way they were, or re-establish what we regard as "normal." And then, for many of us, we're done.

No such goal seems immediately obvious with this population. They can't return to a normal they've never known. We don't much feel like we're helping when what we're really doing is maintaining a status which is generally pretty slow.

Most of the time, the best we can hope for are small, cumulative changes devoid of much drama, and there are few cute covergirl images.

Would better, or at least different, PR help?

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Moon: Including what?
Spiggott: That everything I've ever told you is a lie.
Moon: That's not true!

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Fineline
Shipmate
# 12143

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quote:
Originally posted by RuthW:
Oh, please. From what I see of disability, it's not exactly a walk in the park, so yeah, I'm not too excited about the possibility of becoming disabled. And don't give me the crap about how having a disability is all about learning to adapt and work around it, and that it only sucks because society makes it suck.

I didn't say it only sucks because society makes it suck. I said that a common view among disability activists (and which I have personally found to be the case) is the society disables people more than their disability does. Of course disabilities can suck - but the thing is, if you have a disability, particularly if you've had it all your life, you're not thinking about your disability all day long. You are also getting on with life. Of course you learn to adapt and work around it - you have to. Obviously each person's disability is different, but practically everyone I know with a disability, no matter how much it sucks, is adapting and working around it, and really doesn't see it as the most dreadful thing in the world. Of course if a person acquires a disability later in life, rather than being born with it, there will be a period of grieving - that is natural. But I don't know anyone with a disability who would welcome people thinking it must be the worst thing in the world to be them.

The truth is, we all have shit in our lives, whether we have a disability or not. Having a disability doesn't automatically make your life shitter than everyone who doesn't have a disability. For myself, having Aspergers is difficult, but it's all I know, so it's not something I'm thinking about all day long. From what I learn about people who are not on the autism spectrum, they process a lot of things automatically that I have to process with my intellect - which must be very easy and convenient for them. I get exhausted a lot. I get a lot of sensory overload which can be very uncomfortable. But I'm actually quite happy being me. If I got the opportunity to swap with being you, for instance, I wouldn't want to.

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la vie en rouge
Parisienne
# 10688

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With respect (in Hell! Who knew? [Biased] ) I think Aspergers is a bit different to certain physical disabilities. Because having Aspergers is a part of person's personality, I've heard a lot of Aspies say they wouldn't want to be without it because they wouldn't be themselves any more. That I can understand.

OTOH I think plenty of people with physical disabilities would happily do without them if they had a choice. My boyfriend, for example, has a severe visual impairment. He works around it, has a productive life doing a job he loves (schoolteacher), and one of the things I most admire about him is his ability to go through large amounts of very sucky medical treatment without getting bitter and twisted (he's currently recovering from having a detached retina, and you don't even want to know how much that hurts). His whole life is not defined by being disabled. However, if tomorrow he was offered the possibility of being able to see, I'm fairly sure he wouldn't hesitate for a second to say goodbye to the disability.

[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]

[ 21. June 2013, 09:18: Message edited by: la vie en rouge ]

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Moo

Ship's tough old bird
# 107

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quote:
Originally posted by la vie en rouge:
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]

I knew a woman who had been profoundly deaf from birth. She was in her twenties when I met her. She said that she wished she hadn't been born deaf, but if she suddenly became able to hear, the noise might drive her crazy.

Moo

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Sine Nomine

Ship's backstabbing bastard
# 66

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I have heard it suggested that the beggars healed by Jesus might have been pissed when they had to find a new line of work.

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Precious, Precious, Sweet, Sweet Daddy...

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Fineline
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# 12143

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quote:
Originally posted by la vie en rouge:
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]

I think you misunderstood my post if you thought I was suggesting that. I'm not sure what I said to make you think that - but apologies for the miscommunication. Of course, lots of people with disabilities would prefer not to have their disability. It would be stupid to suggest otherwise. And yes, Aspergers is different, but there still are plenty of elements of my Aspergers that I'd change if I had the choice. I don't like the disabling fatigue I get (it's so frustrating to have to spend lots of time in bed doing nothing, when I have so much I'd like to do). I also don't like the sensory overload - it gets very overwhelming, uncomfortable and often painful, and stops me being able to function sometimes. And the fact I don't recognise faces - that is very embarrassing. And there are other elements I don't like - too many to list here. I'd change those if I could - if there was an imaginary magic spell that could fix them. But there isn't, so it's not something I spend time thinking about.

What I was saying was that if I were given the choice, I wouldn't change with RuthW. I wouldn't be her instead of myself. I wouldn't be anyone instead of myself. Because no one's life is a bed of roses. Everyone has shit in their lives, as I said. RuthW might not have Aspergers or a disability, but she will have other unpleasant things in her life, I'm sure. And I don't want to give up my shit and take someone else's shit. Better the devil you know and all that. I'm sure most people have things in their life that they would like to change. Not just people with disabilities. Having a disability isn't the worst thing ever that can happen to someone.

To say that people with disabilities don't normally want to be seen as terribly unfortunate and pitied, as if their fate was the worst fate ever, is not the same as saying they wouldn't change things if they could. But I think it's important to point out that lots of people without disabilities would also change things in their lives too.

Actually, if I had a choice of one thing to change in my life, the unpleasant aspects of Aspergers would not be the thing I would change. I'd get my eyesight fixed - even though my eyesight is not a disability, as it is corrected with glasses. I would get it fixed so I could read without glasses. I love reading, and I find it far more comfortable to read without glasses, but I've become so short sighted that the only way I can read without glasses is to put the book up to my nose to read, which is not comfortable either. I imagine that I'm not the only person with a disability, who, if asked which one element of their life they'd want changed, would select something other than the disability.

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Fineline
Shipmate
# 12143

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quote:
Originally posted by Moo:
]I knew a woman who had been profoundly deaf from birth. She was in her twenties when I met her. She said that she wished she hadn't been born deaf, but if she suddenly became able to hear, the noise might drive her crazy.

Moo

Generally, people in Deaf communities don't see being deaf as a disability - because in their communities, everyone is deaf, so they communicate by sign language, and have their own Deaf culture. Being deaf is only a disability in a predominantly hearing community. Same principle applies to a lot of disabilities. If no one had legs, then not having legs wouldn't be a disability - society would be totally adapted around it, and people would function just fine.

Lots of Aspies say they don't see Aspergers as a disability, and if there was a pill to get rid of their Aspergers they wouldn't take it - although I do find when I say 'Well, I'd keep the good parts, but I'd be quite happy to take a pill to get rid of sensory overload', I haven't yet come across any Aspie who hasn't conceded that they'd take such a pill too!

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Doublethink.
Ship's Foolwise Unperson
# 1984

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quote:
Originally posted by Moo:
quote:
Originally posted by la vie en rouge:
[ETA - There are no doubt some physically disabled people who wouldn't change given the choice, but my point is that I find it patronising and untrue to suggest that none of them would]

I knew a woman who had been profoundly deaf from birth. She was in her twenties when I met her. She said that she wished she hadn't been born deaf, but if she suddenly became able to hear, the noise might drive her crazy.

Moo

There is clinical evidence that is you suddenly reacquire a sense (or acquire it for the first time) it can be quite traumatic if it is not managed properly. Depends how long you have been without - the brain has to readapt.

--------------------
All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Doublethink.
Ship's Foolwise Unperson
# 1984

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quote:
Originally posted by Fineline:
Being deaf is only a disability in a predominantly hearing community. Same principle applies to a lot of disabilities. If no one had legs, then not having legs wouldn't be a disability - society would be totally adapted around it, and people would function just fine.

I disagree with this. A social model of disability is important but it is not the whole story. I have seen model that describes disability in three parts.
  • There is a core difference / impairment - perhaps damage to the auditory nerves due interruption of oxygen supply during birth. In other words there is an objective difference in one's physical self
  • There is disability - the way that difference manifests in the world, e.g. can not hear. Which is a problem not just because of society, but also because you can't hear a stampede or a fire or because most people are not deaf and your communication and socialisation with people is impaired
  • Then there is handicap - which is what society does to you, when it does not adjust. E.g. When deaf children were not permitted to sign, or if people assume because you have a physical disability you are worthless and should be put out of sight and out of mind in an abusive institution. Or less dramatically, but more pervasively, a built environment that assumes you can easily walk.

You can adapt to having no legs, and society can adapt itself around you - but it is inherently more difficult to be a human being with no legs because we haven't evolved the adaptations to go with that.

I think one of our biggest problems though, is that we don't trumpet the contributions made to society by ordinary people with disabilities. I don't mean paralympians and Stephen Hawking, but - for example - the lady with an intellectual disability who worked the till in one of our local Oxfam shops, five days a week, for years.

Some active retired person without a disability who did that would be celebrated for their philanthropy.

[ 22. June 2013, 07:59: Message edited by: Doublethink ]

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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mousethief

Ship's Thieving Rodent
# 953

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quote:
Originally posted by Sine Nomine:
I have heard it suggested that the beggars healed by Jesus might have been pissed when they had to find a new line of work.

Probably from Monty Python's "Life of Brian."

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This is the last sig I'll ever write for you...

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Golden Key
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# 1468

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quote:
Originally posted by Doublethink:
[There is clinical evidence that is you suddenly reacquire a sense (or acquire it for the first time) it can be quite traumatic if it is not managed properly. Depends how long you have been without - the brain has to readapt.

I've read of people who've always been blind and are given sight. Sometimes, it's too much, and they revert to closing their eyes.

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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
--"Oh, Peace Train, save this country!" (Yusuf/Cat Stevens, "Peace Train")

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Sioni Sais
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# 5713

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quote:
Originally posted by mousethief:
quote:
Originally posted by Sine Nomine:
I have heard it suggested that the beggars healed by Jesus might have been pissed when they had to find a new line of work.

Probably from Monty Python's "Life of Brian."
Thinks: ex-beggars sat around arguing "What did Jesus ever do for us?

--------------------
"He isn't Doctor Who, he's The Doctor"

(Paul Sinha, BBC)

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mousethief

Ship's Thieving Rodent
# 953

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quote:
Originally posted by Sioni Sais:
Thinks: ex-beggars sat around arguing "What did Jesus ever do for us?

No, but that would be good! Here, try this.

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This is the last sig I'll ever write for you...

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Fineline
Shipmate
# 12143

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quote:
Originally posted by Doublethink:
quote:
Originally posted by Fineline:
Being deaf is only a disability in a predominantly hearing community. Same principle applies to a lot of disabilities. If no one had legs, then not having legs wouldn't be a disability - society would be totally adapted around it, and people would function just fine.

I disagree with this. A social model of disability is important but it is not the whole story.
I agree the social model is not the whole story. And that is why I said it applies to a lot of disabilities, not all of them. It doesn't account for pain, for instance - people in pain will be in pain regardless of society. And I am aware of the 'impairment, disability, handicap' model. It is a good model, but I'm not quite sure how it contradicts what I have said.

Of course, we have legs and hearing because they are useful. But if no one in society had them, then while we would be missing something potentially useful, we would adapt so that it wouldn't actually be a disability. If we couldn't hear, our other senses would be heightened and we'd detect danger in other ways.

You say that deafness 'is a problem not just because of society, but also because you can't hear a stampede or a fire or because most people are not deaf and your communication and socialisation with people is impaired'. Those last reasons are precisely because of society. If most people are not deaf, of course deafness is a disability. That is what I said: 'Being deaf is only a disability in a predominantly hearing community.' As for hearing a stampede or a fire - if everyone in society was deaf, I am very sure that the other senses would detect a stampede or fire.

Regardless of which model you are using, disability (and impairment and handicap) are defined by comparison. If everyone has the same thing, then these words become useless to describe it. And realistically, there are all kinds of 'normal' difficulties that all humans face, in body and mind, that would potentially be seen as disabilities if the majority of people didn't have them.

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Sine Nomine

Ship's backstabbing bastard
# 66

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The Mormons are right. Everyone should have their own planet.

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comet

Snowball in Hell
# 10353

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and yet, so many billions of bastards who refuse to vacate mine.

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Moo

Ship's tough old bird
# 107

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Helen Keller was once asked which she thought was worse, blindness or deafness.

She said that blindness cut you off from things, and deafness cut you off from people She thought deafness was worse.

Moo

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See you later, alligator.

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Uncle Pete

Loyaute me lie
# 10422

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Miss Keller was a very astute woman.

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Even more so than I was before

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Fineline
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# 12143

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quote:
Originally posted by Moo:
Helen Keller was once asked which she thought was worse, blindness or deafness.

She said that blindness cut you off from things, and deafness cut you off from people She thought deafness was worse.

Moo

That is interesting. I've not heard that before. I wonder if she would have said the same if she'd had the experience of being deaf while being able to see, and also the experience of being blind while able to hear. It must be hard to judge if you've never had either - you don't experience how the two are interlinked. I'm just thinking about how several of the children I work with don't talk, and so much of our communication is visual. I think maybe I would feel more cut off from people if I couldn't see - although of course it's impossible to speculate accurately while being able to see and hear.
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Porridge
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# 15405

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quote:
Originally posted by Fineline:
quote:
Originally posted by Moo:
Helen Keller was once asked which she thought was worse, blindness or deafness.

She said that blindness cut you off from things, and deafness cut you off from people She thought deafness was worse.

Moo

That is interesting. I've not heard that before. I wonder if she would have said the same if she'd had the experience of being deaf while being able to see, and also the experience of being blind while able to hear. It must be hard to judge if you've never had either - you don't experience how the two are interlinked. I'm just thinking about how several of the children I work with don't talk, and so much of our communication is visual. I think maybe I would feel more cut off from people if I couldn't see - although of course it's impossible to speculate accurately while being able to see and hear.
Helen Keller was born with both sight and hearing. She lost them during illness in her early childhood. Granted she did then have both, rather than experiencing these one at a time, and I don't know what, if any, memories she retained of these experiences. But that initial experience may have been important in her later insight.

--------------------
Spiggott: Everything I've ever told you is a lie, including that.
Moon: Including what?
Spiggott: That everything I've ever told you is a lie.
Moon: That's not true!

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Fineline
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# 12143

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quote:
Originally posted by Porridge:
Helen Keller was born with both sight and hearing. She lost them during illness in her early childhood. Granted she did then have both, rather than experiencing these one at a time, and I don't know what, if any, memories she retained of these experiences. But that initial experience may have been important in her later insight.

Ah, okay - 19 months old, according to Wikipedia. I heard her story a long time ago, and must have remembered it wrong. But that makes more sense, actually, in terms of her ability to develop communication skills. She would have developed a lot of language already, while her mind was in its formative stage. That must have made it easier for her to learn to communicate and use language later on. I'm still not convinced that we use sight for things and hearing for people - it doesn't seem like such a binary to me - but I may be wrong, and I guess to some extent it differs from person to person. But it seems to me that both deafness and blindness would cut you off from people in different ways, because you can neither hear them nor see their lip movements/signs/gestures/facial expressions/eye contact, etc.

I have a deaf friend who isn't cut off from people at all - she has lots of friends and is far more sociable than I am. Like Helen Keller, she wasn't deaf from birth though - I think she became deaf around the same age as Helen Keller did - so she would have already developed language (as in the English language) which makes a big difference in terms of communicating with the non-deaf world, and also in terms of being able to later learn sign language.

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QLib

Bad Example
# 43

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I think, to be fair to Helen Keller, she was obviously summarising for the sake of simplicity. Both blindness and deafness create some barriers to communication but - here's where we get to the social model - those barriers are not just about the impairment; what's on the other side also matters. As far as I can judge from the life stories I've heard, one of the commonest side effects of sudden sight loss in your teens is the loss of all your friends. You may make new friends later but, in the meantime, you may have learnt things about human nature that you'd rather not have known.

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Tradition is the handing down of the flame, not the worship of the ashes Gustav Mahler.

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Fineline
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# 12143

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I think (trying to imagine myself in the different situations - and there's probably lots of aspects I haven't thought of) that if I went blind, I would be a lot more nervous about going out than if I went deaf. I can imagine I'd want to stay at home, and I'd probably isolate myself in doing so. I would feel more dependent on others. Even when my glasses broke at work, and I had to go to find someone on the management team to tell them I needed to go to get them fixed, I had to ask a colleague to come with me, because I wouldn't be able to see the way or recognise the people I had to talk to.
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QLib

Bad Example
# 43

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quote:
Originally posted by Fineline:
I think ... that if I went blind, I can imagine I'd want to stay at home, and I'd probably isolate myself in doing so. I would feel more dependent on others.

Temporarily, perhaps, (not sure about "want") but there are ways round that. It gets tricky once you get past retirement age as the government no longer gives a fuck whether you are functional or not - though local blind associations may still help. However, if you go blind before retirement age you can get training to help you live independently.

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Twilight

Puddleglum's sister
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Ray Charles (blind) left a huge amount of money to the deaf. He said he thought it would be far worse because they wouldn't have music. I know I would rather see. Reading comes far before music in my life.

I guess a lot of it is what means the most to you. I remember hearing a young woman who couldn't walk, speaking before congress at a "right to die" hearing. She wanted to die because she could no longer ski. I was amazed.

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Fineline
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quote:
Originally posted by Twilight:
Reading comes far before music in my life.

I am the same - that is why I was thinking it might depend on the person. I prefer silence to music. I prefer communicating with people in writing rather than speaking. I easily get overwhelmed with sounds, but I love to read, and I love art, and drawing what I see. Although it's impossible to tell unless one is in the situation, and of course being deaf would be hard in many ways, I think being deaf would be easier for me than being blind.

And QLib, yes, of course there would be ways of finding strategies to find one's way around if one went blind. I was just imagining what my immediate reaction would be. My gran went blind in her seventies, and she continued to get around and see her friends, and was as social as ever - but she was a very social person in general. And she got support from the RNIB. My grandad, whose sight and hearing were both fine, was a lot more isolated, because he wasn't a social person, and like me, he easily got overwhelmed by noise and people.

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Porridge
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quote:
Originally posted by Twilight:
Ray Charles (blind) left a huge amount of money to the deaf. He said he thought it would be far worse because they wouldn't have music. I know I would rather see. Reading comes far before music in my life.

Good thing this is posted in Hell. [Mad]

As one who is not deaf, but experiences significant hearing loss, I find Charles's statement infuriating and brutally insensitive. Yes, music is wonderful (when you can hear it). That is not the barrier, however, which the Deaf (and merely hard-of-hearing, like me) must contend with.

It's perfectly possible to live life without music. Living it without adequate or full communication with other human beings renders life an incredibly frustrating struggle.

Hearing people have NO IDEA how much general information we pick up about the world through simple, ordinary conversation.

Examples:

The deaf client whose doctor instructed her via TTY to take two aspirin and call next day and disconnected. A remarkably healthy young woman, the client did not know what aspirins were and had no idea how or where to obtain them. She grew up in a hearing family and never "picked up" this info, usually conveyed accidently as side-info to a larger conversation.

I am constantly encountering people who know me, but I have no idea what their names are. They've been mentioned to me, no doubt, but I must work so hard to "get" the info I need at any given moment, I must focus only on what's immediately relevant and let the rest go. Even with this, I am exhausted at the end of the day.

Having a lover or other intimate whisper sweet nothings in one's ear, and being forced to respond with, "What was that?"

Intimacy is a challenge when it must be carried out at a bellow.

And as to reading, there is Braille.

quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.

In which case, the rest of us might be better off if she were.
[Mad]

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Spiggott: Everything I've ever told you is a lie, including that.
Moon: Including what?
Spiggott: That everything I've ever told you is a lie.
Moon: That's not true!

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Uncle Pete

Loyaute me lie
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Amen Porridge! It is the one part of my disability that irritates me beyond belief. And it irritates other people equally strongly.

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Even more so than I was before

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Fineline
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# 12143

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quote:
Originally posted by Porridge:

Hearing people have NO IDEA how much general information we pick up about the world through simple, ordinary conversation.

Examples:

The deaf client whose doctor instructed her via TTY to take two aspirin and call next day and disconnected. A remarkably healthy young woman, the client did not know what aspirins were and had no idea how or where to obtain them. She grew up in a hearing family and never "picked up" this info, usually conveyed accidently as side-info to a larger conversation.

When I was training to work with children with hearing impairment, we learnt about this sort of thing - apparently children with hearing impairment can be mistaken for being on the autism spectrum if the hearing impairment isn't detected, because of the fact they don't pick up on the banter between other children in the classroom. The banter and jokes that are whispered during class while the teacher is talking are part of social development and knowing what's going on socially one's peers. Children with hearing impairment are excluded from all this because they just don't hear it. Autistic children don't pick up on it - because of difficulty multitasking and difficulty picking things up indirectly. Of course, this also applies to adults as well as children. So although autism and hearing impairment are very different in many ways, I can relate to this element of hearing impairment, because of being on the autism spectrum - there is so much information that I just miss, and people think I'm stupid for not knowing it.
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Doublethink.
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Trying to work out what disability is 'worst' is probably futile - I only raised the issue re deafness because I wanted to challenge the idea of it as a difference solely.

We can not live the lives we have not had, self-identity is so important that I imagine if you have lived with some condition for a long time it will be difficult to see how you would be you without it. Likewise, if the acquisition of a disability fundamentally disrupts your sense of yourself you may wish to die. Also, the stigma that goes with the label of disability may make it important to some people to assert they do not have a disability - but I think that is at least partly because the label of disability is heard as an assertion of lack of worth. The problem with changing the language every ten years, is that whilst negative attitudes persist it will always acquire negative connotations.

There was a young British rugby player (in his twenties I think) who with the support of his parents went to the Dignitas clinic and ended his life. He had broken his neck playing the game and couldn't bear the idea of his future. Christopher Reeve handled things differently.

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Doublethink.
Ship's Foolwise Unperson
# 1984

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quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.

In which case, the rest of us might be better off if she were.
[Mad]

Failed to quote this in my last post - I see this woman as being like the young rugby player I referred to.

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Fineline
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# 12143

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quote:
Originally posted by Porridge:
They've been mentioned to me, no doubt, but I must work so hard to "get" the info I need at any given moment, I must focus only on what's immediately relevant and let the rest go. Even with this, I am exhausted at the end of the day.

And this too is how it is for me. That this is also an element of deafness didn't occur to me, although now you say it, it is obvious.
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Fineline
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quote:
Originally posted by Doublethink:
Also, the stigma that goes with the label of disability may make it important to some people to assert they do not have a disability - but I think that is at least partly because the label of disability is heard as an assertion of lack of worth.

I find it very weird to have a label of disability, since I have always had Aspergers, but was only diagnosed as an adult, so suddenly as an adult I become 'disabled', when in fact I'm just the way I always was. My dad insists that I don't have a disability, because his understanding of the word 'disabled' is someone in a wheelchair.

I think it's also weird for people who grew up being told they were 'handicapped', so that is part of their self-understanding, and then later in life they get told that 'handicapped' is an offensive word and they are 'disabled' instead. That can be quite difficult for people.

Labels have their uses, but also can be unhelpful in many ways.

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luvanddaisies

the'fun'in'fundie'™
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That seems to be something a lot of people with massively varying disabilities and conditions seem to say - the tiring-ness of extra effort to get through the day, that they might not have to expend if their body/mind worked typically (not even going to try to define what 'typically' means).

(x-posted with Fineline - was replying to Fineline's post above the last one)

[ 23. June 2013, 20:05: Message edited by: luvanddaisies ]

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"Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines, sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover." (Mark Twain)

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Porridge
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# 15405

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quote:
Originally posted by Doublethink:
quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.

In which case, the rest of us might be better off if she were.
[Mad]

Failed to quote this in my last post - I see this woman as being like the young rugby player I referred to.
Yes, exactly. People with disabilities must learn, above all else, that they are not defined by their disabilities. It might be a good idea for people with particular gifts to learn that they are not defined by those gifts.

People willing to die because they can no longer ski or play rugby have placed far too many eggs in a single, fragile basket.

--------------------
Spiggott: Everything I've ever told you is a lie, including that.
Moon: Including what?
Spiggott: That everything I've ever told you is a lie.
Moon: That's not true!

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Golden Key
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# 1468

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quote:
Originally posted by Doublethink:
There was a young British rugby player (in his twenties I think) who with the support of his parents went to the Dignitas clinic and ended his life. He had broken his neck playing the game and couldn't bear the idea of his future. Christopher Reeve handled things differently.

But CR had financial and other resources that most people don't have. Dana, his wife, acknowledged that they were very lucky in that respect, and that she didn't know how other people made it through.

IIRC, it took several helpers to get him through the day. Dana devoted herself full time for the first year. Then she went back to her career, to keep some balance. (Wise, IMHO.)

NOT saying that anyone should (or shouldn't) kill themselves in such a situation. Just that resources make a difference.

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Blessed Gator, pray for us!
--"Oh bat bladders, do you have to bring common sense into this?" (Dragon, "Jane & the Dragon")
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QLib

Bad Example
# 43

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quote:
Originally posted by Porridge:
quote:
Originally posted by Doublethink:
quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.

In which case, the rest of us might be better off if she were.
[Mad]

Failed to quote this in my last post - I see this woman as being like the young rugby player I referred to.
Yes, exactly. People with disabilities must learn, above all else, that they are not defined by their disabilities. ...

People willing to die because they can no longer ski or play rugby have placed far too many eggs in a single, fragile basket.

Don't be a twat, Porridge - being deaf doesn't give you the right to pontificate about what people with other disabilities 'must learn'. Perhaps you'd like to walk a mile in the rugby player's shoes before making that judgement. Except that you wouldn't actually be able to walk, of course.

I don't suppose that, in either case, it was just about skiing or just about rugby. In fact Doublethink said he couldn't face his future, not that he couldn't face playing rugby again.

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Porridge
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# 15405

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quote:
Originally posted by QLib:
Don't be a twat, Porridge - being deaf doesn't give you the right to pontificate about what people with other disabilities 'must learn'.

First, there's an enormous difference between being deaf (I'm not) and being hard-of-hearing (I am).

Second, in the field of acquired disabilities, it's pretty standard practice to help the newly-disabled not only adjust to the acquired disability, but to include in that process a constant focus on what the person can still do, as opposed to what the person can no longer do. "Don't define yourself by your disability" is a standard mantra in this field, not merely my "pontification." Surely the reasons for this focus are obvious: while it's important and necessary to mourn the losses of limbs, senses, functions, and abilities, identifying solely with those losses while ignoring or refusing remaining possibilities is a form of pathology. It can prevent recovery.

Third, as reported on this thread, the skier specifically claimed she wished to die because she could no longer ski. If she mentioned other factors, it went unreported, at least on this thread.

Either rehab staff dropped the ball with her, or she had only partially recovered, or she had focused so intensively on skiing, to the exclusion of other important life issues, that she lost the plot. Were there friends and family who loved her? If so, she seems to have counted her skiing of more value than their potential loss and grief. Were there other skills and talents which she could develop and use to help herself and/or others in her situation? If so, she seems to have counted her skiing of more value than all her other potential.

I can certainly understand and respect the wish to die for individuals enduring, with no hope of relief or recovery, constant pain. I can certainly understand that dealing with a sudden and catastrophic loss of function like Reeve's is overwhelming, especially in situations where there's far less help available than he had. I can certainly understand that feeling one is a crushing burden to loved ones will induce enormous guilt and depression.

If someone says, "Look, not only have I lost many of my functional abilities, but also I've been abandoned by my nearest and dearest because my care is too much for them, and there's no prospect, even experimentally, of advances which might improve my situation" -- then I can certainly understand and respect that person's wish to die.

But are we really prepared to entertain requests for termination on the basis of skiing versus not skiing? Because . . .

quote:
Originally posted by QLib:
I don't suppose that, in either case, it was just about skiing

. . . that was that particular individual's claim. You may be right (I fervently hope you are) that there were additional issues, but that's an assumption. Skiing was the reason given in the individual's statement according to Twilight.

quote:
Originally posted by QLib:
. . . or just about rugby. In fact Doublethink said he couldn't face his future, not that he couldn't face playing rugby again.

Here we're dealing with the kind of prediction many people make when depressed. Depression (and mournful predictions about all the things we'll *never* do again or the current status quo which will *always* obtain) is common in acquired disability; so is depression, which itself is often disabling (and I'm painfully familiar with that phenomenon). Would you seriously entertain requests for death from someone who is overwhelmed, depressed, and making predictions -- sometimes inaccurate -- that include words like "never' and "always?"

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Spiggott: Everything I've ever told you is a lie, including that.
Moon: Including what?
Spiggott: That everything I've ever told you is a lie.
Moon: That's not true!

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QLib

Bad Example
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Well, it's all about tone, isn't it? I don't have an argument with your position as explained above. It was really this that got me riled:
quote:
Originally posted by Porridge:
quote:
Originally posted by Twilight:
She wanted to die because she could no longer ski. I was amazed.

In which case, the rest of us might be better off if she were.
[Mad]

Resisting the 'disability as tragedy' model is one thing (and entirely laudable); suggesting that the world might be better off without a disabled person who loved skiing too much is something else - and not in a good way.

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Tradition is the handing down of the flame, not the worship of the ashes Gustav Mahler.

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Porridge
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# 15405

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Well, this is Hell, and that was a Hellish comment -- perhaps more hellish than sincerely meant. In light of the daily suffering some of my clients endure, the skiing remark angered me.

Most of my clients struggle with profound isolation, loneliness, depression, discrimination, physical intimidation from others, fear, extreme poverty, and deep alienation. Even for those with the physical capacity to manage it, getting on a pair of skis and zooming down a mountain for fun would be sheer out-of-reach fantasy. They can't afford to rent equipment or purchase appropriate clothing; they have no way to get to a ski resort; if they got there, they might well be refused service or access (however illegally); and you can be sure that if it happened at all (probably over the objections of family and/or guardians and/or those supervising me on that basis of liability for their safety), it would happen only once, because it would exhaust their will and systemic resources.

Yet they do not give up on life; they savor miniscule pleasures and celebrate tiny victories; and they keep on keeping on in hopes of small improving tweaks to their situations.

I do think that the statement as reported (and I recognize that it may have been reported incompletely or inaccurately) indicates a shockingly skewed set of priorities.

--------------------
Spiggott: Everything I've ever told you is a lie, including that.
Moon: Including what?
Spiggott: That everything I've ever told you is a lie.
Moon: That's not true!

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Erroneous Monk
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# 10858

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quote:
Originally posted by Doublethink:


We can not live the lives we have not had, self-identity is so important that I imagine if you have lived with some condition for a long time it will be difficult to see how you would be you without it. Likewise, if the acquisition of a disability fundamentally disrupts your sense of yourself you may wish to die.

This thought about sense of self seems wise to me. When I look back to the time before I developed a chronic neurological condition and lost so much eyesight that my driving licence was withdrawn, I don't think it would have been helpful to me to have thought of myself as "temporarily-able bodied" but it is only in retrospect, that I realised that I was only temporarily *that person*. I didn't appreciatd that at the time and if I could go back and give my younger self that understanding I would.

That said, telling people that they will not always be the person they think they are won't necessarily make them believe it, or understand it. I mean, I knew that becoming a mother would change me, but that didn't prepare me for the big change in sense of self that came with pregnancy, birth and mothering.

It can be very hard to accept that to live is to change, and to be perfect is to have changed often.

--------------------
And I shot a man in Tesco, just to watch him die.

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