I think Paul should tell Paul’s story.
Given that he's intellectually disabled, the likelihood of this being coherent is low. Do you think that such people's stories should only be told by them? My aunt is also intellectually disabled, but in a profound way. She can't read or write, doesn't even really know what a story is. The limit of her story, which is now over 50 years old, should be the 5 words she can put together into a sentence? Insisting on this is precisely what makes the intellectually disabled into unpeople, invisible to those with no experience of them. Everyone's got an opinion about them, but very, very few people have to actually deal with them, and even fewer do so willingly, without expectation of reward beyond perhaps the satisfaction that they have done good. I want to hear from them. It helps give me insight into how I can help, and what might be expected as outcomes for people with these troubles.
Also, Paul is only a first name. He hasn't been singled out, with surname, address and phone number, facebook page and photos. Only people who already know Paul will recognize him from the descriptions. I expect they'll be nodding their heads on every point.
I'm sorry you found the story made you uncomfortable. Making people uncomfortable is the story of Paul's life, it seems. You'd probably be a damned sight more uncomfortable being in the room with him. And you'd be enduring endless discomfort if you chose to help him frequently. I'm glad that David has that courage.
This isn't Paul's story, it's David's story of his friendship with Paul. David is saying how it is for him.
Paul's disability doesn't define him, but it has shaped much of his life. It's what Paul and those who know him have to work with.
Quite the opposite of objectifying Paul, David is sharing with us what a rich connection he and Paul have, as one person to another. I'd be surprised if most neurotypicals had such a strong friendship in their lives.
This is beautiful and brilliant and it gives me much to think about.
aspects of someone’s life have been written about and published in a manner that I personally found a little uncomfortable.
That's your problem. Own it, or do something with it. Figuring out why you feel that might be a start.
Then there is Work & Income New Zealand.
Yes, there it sits that institutionalised insult to the wondrous human capacity to show compassion and care for our fellow beings. This is what should be driving us, our motivation to grow as a conscious species, not money or even worse that insult to us all "free markets". Even the current acronym seems calculated to insult the now called "clients" who must turn to it for financial help. And that is about the only kind of assistance it seems capable of doing, even then it is half hearted, begrudging. As if ready to be snatched away if you don't fulfil their "criteria" to the letter.
As our supposedly grown up society pushes us into ever narrowing, easily defined categories for ease of implementation of policy dreamed up by those whose only concern is to get themselves elected and thus strut the world stage displaying their cardboard cut out virtuousness for all to approve of. And as they despoil this planet, our birthplace and home.
It ranks up there with that other anachronism of an institution based in this capacity of ours. But now just sits like a relentless harpy fingers poised close to our collective purse. Yes you guessed it, organised religions. Once a place of refuge and salvation. Birthplace for outpouring of our finer thoughts and sentiments. Now a soothing salve for all kinds of lunacy, from mindless ravings, to the well off indulging their numb skullery and padding their nests with whatever luxury them deem necessary for a comfortable existence, while dropping 20 cents in the collection plate.
Yes I feel sympathy for such as Paul. Thank you Mr Herkt
What is this? I’m not sure I like it.
I understand why you might not recognise this. It is called empathy, something that used to flourish in this country, but has now been largely eradicated in the wild, by the efforts of micromanagers and powerful sociopaths.
Then there is Work & Income New Zealand.
Yes, there it sits that institutionalised insult to the wondrous human capacity to show compassion and care for our fellow beings. This is what should be driving us, our motivation to grow as a conscious species, not money or even worse that insult to us all “free markets”.
Standing ovation! Well said...
I’m sorry you found the story made you uncomfortable. Making people uncomfortable is the story of Paul’s life, it seems. You’d probably be a damned sight more uncomfortable being in the room with him.
That's an unfair and untrue comment. My discomfort came from the article, not Paul. I thought I made that point very clear.
I think Paul should tell Paul’s story. That’s my point. Intimate aspects of someone’s life have been written about and published in a manner that I personally found a little uncomfortable.
Fair enough, and it takes some courage for you to say so. I just think you've missed the richness and importance of the story David tells here.
Paul's disability doesn't define him, but it has shaped much of his life. It's what Paul and those who know him have to work with.
Society's expectations include people speaking on behalf of disabled people as being OK, so I can understand Dylan's reaction.
Perhaps David can shed light on how he asked Paul about telling us chunks of his life?
I believe admiring David's storytelling and being uncomfortable about it are not mutually exclusive..
That’s an unfair and untrue comment. My discomfort came from the article, not Paul. I thought I made that point very clear.
OK, fair enough, I retract that estimation of probabilities, which comes mostly from my own experience of feeling uncomfortable myself. It's pretty natural to feel uncomfortable around adults who behave in ways that are often highly inappropriate, just because of who they are. To stick with it is hard work.
I'll say no more, it took some resources of your own to say your point. It's how you feel.
Whew! This is a mixed bag of things. I'm going to address them all in one bunch instead of point-by-point to the owners.
I wrote the piece out of admiration for Paul, and pride in Paul, respect for Paul, and a huge, huge regard for Paul. He drives me nuts sometimes and to my shame my reactions have sometimes not been good ones. I can only be human with him. I do my best but I am not a saint. I also think being human is one of the best things one can do in this situation - I'm not an employee, an abstract 'carer', I'm a person. Paul is my friend. The friendship has survived through thick and thin for 14 years. I've actually just got off the phone with him (ceiling insulation was the unexpected primary topic).
I understand the discomfort that some people might feel. Honestly, I feel it all the time. I have this quasi-official role with Paul that hasn't got a job-description. I usually just stick with 'friend'. I have a couple of official roles and I'm listed on a few official forms, but Paul has 'fired' me so often now, so I forget quite what they are... ['firing' is Paul's term for it, by the way, and it is his way of asserting who he is and the fact he has power over his world]... Often my role, apart from the friendship and the company, is just being this weird interface who can fix things sometimes.
Now, in as far as Paul's consent goes. Right, Paul knows I write. I have told him I wrote something about him and it is on the internet. Paul doesn't know what the Internet is, really. Sometimes I wish I had a bit more money and get him a tablet, just to see what happens, but he can't really write. He can't really read.He's good with phone numbers and he can write his name. But the Internet is not something that means much to him. So telling him that the story is here on Public Address and people read it is not something that means anything to him.
I kept his real first name in the piece for the simple reason I am very proud of him. I experimented with 'Peter' and others but I thought 'why?'. In some small way I wanted to salute him personally for everything. So it stayed... It was pride in who he is. Pride in the fact that he battles confusions and forces and poverty and environment and abandonment like most of us never realise and has kept it together. I doubt anyone could find him unless they already knew him. And if you know him there are no revelations in what I've said.
Paul telling his own story is a good idea. He delights me. I'm sure he'd be good 'talent'. I'm not sure he'd be good talent for unfamiliar people in an unfamiliar environment. But in an odd way, while I might have described him, I was really describing not so much him, but my experience of him. It was filtered through me. You didn't get Paul, you got my experience of him. Paul is much, much richer than I made him.
I realise I might have pushed a few boundaries in terms of people's discomfort - and possibly about sex. One of the great Paul moments was early on, when I was trying to get a range of official services for him (and official now usually means private organisations contracted to government) so Paul was being interviewed by some official 'ladies' from a religious organisation. It didn't work for Paul. He didn't like them or their smile-and-nod attitude to him and his 'disabilty'. He told them he was gay, wandered off to the bedroom, came back and dumped an explicit gay magazine on the table to prove it... and they didn't return. The gay part of Paul is just another layering, another thing to deal with, that makes him such a rich human-being. Sometimes in the style of that Vodafone ad, I want to go "Double Rainbow! So intense!"
I'm pleased though that people have considered their own relationships to other human beings who are too often pushed out of sight. The great range of being human is frequently made narrow and mean. We are bigger than what we usually see. Being human is a wider range than is represented. Selfishly, Paul has made me a better person and for that I thank him.
I think both Paul and I and my partner John (the unacknowledged saint in all of this - he puts up with both Paul AND I) are all pretty happy with the way its turned out. I know Paul's happier than when I first met him. That's all I can say, really.
objectify a real person
Oddly what I liked most about this piece was it's "plainness". Which is not meant in any way to imply the writing is plain. But more that it is a (deceptively) simple retelling of a plain simple relationship between friends.
If anything rather than objectifying a person, the essay/story/blog personalised someone mostly treated as an inconvenient if animate object.
I wrote the piece out of admiration for Paul, and pride in Paul, respect for Paul, and a huge, huge regard for Paul.
I thought that shone through.
I'm just working on a funding application for research on and with people with intellectual impairment.This discussion has highlighted a lot of the issues I am grappling with, so thanks.
I'm not an employee, an abstract 'carer', I'm a person. Paul is my friend
Admirably clear. And rare.
It was filtered through me. You didn't get Paul, you got my experience of him. Paul is much, much richer than I made him.
The great range of being human is frequently made narrow and mean. We are bigger than what we usually see. Being human is a wider range than is represented. Selfishly, Paul has made me a better person and for that I thank him.
Totally. Thank you for shining a light on that.
It is great that David has been an advocate and friend to Paul for so many years. And on one level this is a lovely enlightening story.
However, there is something about this post that has been worrying me and I think it comes down to that ethical test about treating others as you would like to be treated. So would you (David or readers here) be happy to be 'Paul' as portrayed here? To have someone publish quite personal and sensitive stuff about your life without obtaining appropriate consent from you beforehand?To assume that you are unable or unwilling to tell your own story? David claims it is his own story, but with my academic hat it could also be considered that Paul is a participant in David's writing/research on intellectual disability and friendship. As someone who has an interest in research with so called 'vulnerable' participants there are some extra ethical considerations to address when doing such research such as issues around power and status, careful management of relationships and checking for evidence of shared understanding about those relationships, and ongoing negotiation of consent (or at least assent) about revealing any details about participants.
This might sound hypocritical from someone who has written frequently on PA and elsewhere about parenting my son. I can make the same argument as David, that those are my stories about parenting, and not really about my son. But I realised during an event a few weeks ago that I knew very little about my son's thoughts and feelings and that he was quite able to express these himself given time and the right environment. I now realise I need to be more careful and more respectful of him as an autonomous adult human.
So would you (David or readers here) be happy to be 'Paul' as portrayed here?
Actually, yes. I think David did a great job, not just in the writing, but in maintaining an appropriate level of anonymity for Paul.
ummmm..... where to even begin with this?
The Human Rights Act, an asinine piece of legislation, makes it illegal to discriminate against people on the basis of their family status. Naturally, some idiot went to court.
Right.... Actually, I agree with his headline, but I have a different definition of the "cash rush". The "cash rush" obscuring human tragedy is the deification of petty, selfish, mean-spirited greed that has reigned since 1984. True "enlightened self interest" would see us ensuring that all members of our society had the means necessary to lead a decent, comfortable life.
Sorry, extremely tangential to the topic at the very least, but I couldn't think of anywhere more appropriate, only that there must be a more appropriate thread somewhere around here.
ummmm….. where to even begin with this?
I think outright ridicule is a good starting point. I'm quite astonished, really, that he could be so frank about being a total bastard.
I’m quite astonished, really, that he could be so frank about being a total bastard.
That appears to be his shtick. His opinion-pieces are all the same - just different topics.
Damien Grant is someone who knows nothing about the topic, given a platform by those who ought to know better. He is a nasty libertarian fool.
That appears to be his shtick. His opinion-pieces are all the same – just different topics.
Quite. But he's a doctrinaire libertarian. It's how they roll.
Philip Patston has written a wise and slightly sorrowful blog post about this blog about Paul.
Great post by Philip Patston, but when you asked your question above:
So would you (David or readers here) be happy to be ‘Paul’ as portrayed here?
My answer was yes and remains so, because I interpret that question as about the way the article was written, which doesn't worry me.
I felt Philip was reacting more to the facts and events in the real world as described in David's post, and yes, I think he does raise serious concerns.
But looking back at your questions, I see this one that I overlooked:
To assume that you are unable or unwilling to tell your own story?
Now that changes things. Give me a context and I'll be able to answer. Or put it this way, when I first arrived in China I was illiterate in Chinese and knew only "ni hao" (no tones cos I wasn't even sure of that... ). Having people who could get my story across for me was extremely helpful. Now I still find it occasionally useful to have somebody there to speak for me - there are still many contexts in which my Chinese is limited, typically high-end and/or specialised situations like law or vehicle maintenance - but for the most part I am autonomous, and jealous of that autonomy. In between those two extremes there have been many people who have presumed to speak for me when they should've shut up and listened, and that I find exceedingly frustrating to say the least. Sure, not much of a sob story, language learning has always come easy to me, but it's all I've got to go on. I have no idea how to apply this to David and Paul, best I can say is that it's worth remembering we can all easily find ourselves in situations in which we are impaired or disabled.
Patson raises a number of thorny issues, but I'm left thinking, as I do whenever people talk about disabled care without having to actually do it, that every point he raises just shows more clearly how and why Paul is so isolated. Every little moral conundrum pushes people a little further away. Which leaves people like Paul with no-one, or only people who want to use them. To find someone who is really prepared to help out without any family connection or pay is extremely rare. I have only realized this from doing a little bit of it myself.
For some cases, it's really hard work, hard to know what is the right way to help people - every single decision, every moment spent with them is full of doubt. Yet how else can anyone help them unless they are prepared to try, to work constantly at it despite the ambiguities? The helper makes mistakes too, and they're at the end of a long line of other people making mistakes and eventually giving up. A trooper who can keep at it through mistake after mistake is the kind of person I'd trust in the long run to have my back.
So, really, flawed help is a lot better than no help. And no help is precisely the default state with difficult cases.
Regarding the right to tell the story, that's really the only bit that hits me as particularly thorny. But it doesn't sound like there's anyone at all in a better position than David to know whether Paul would, on reflection, if he for some reason had a day when his mind was closer to normal understanding of reasonable, want his story to be told.