Notes & Queries: Paul
91 Responses
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There's a link here with the fallout over the Glenn Inquiry. Good people are leaving that because the structures are not ensuring a safe and confidential space for women (and others) to tell their stories. The Confidential Listening Service in the Department of Internal Affairs provides a better model. Run by Judge Carolyn Henwood it has found a safe and respectful way for those who were abused in state care before 1992 to tell their stories, be listened to, believed, acknowledged, and practical steps to be taken such as ensuring access to appropriate counselling or benefits. There are good ways for so-called 'vulnerable' people to tell their stories,and for the rest of us to learn from them. Doesn't sound like the Glenn Inquiry has found that way.
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Russell Brown, in reply to
But does that mean no one should be able to tell the story, ever?
Quite possibly, yes.
I'm just not sure that's a win. For Paul or anyone else.
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Lilith __, in reply to
But does that mean no one should be able to tell the story, ever?
Quite possibly, yes.
I’m just not sure that’s a win. For Paul or anyone else.
I feel my world's been enlarged by hearing David tell the story of his friendship with Paul. Without stories like this being told, many of us would have no insight at all into the lives of people with serious mental disabilities. We would continue to see them as unlike us.
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diversitynz, in reply to
I’m unclear what you’re trying to achieve by bagging all of us here.
I’m not “bagging” individuals, just refering to a societal norm that has left disabled people disadvantaged and lacking control over their lives and resources, just like women, people of colour, religious minorities, sexual minorities etc etc have and still do experience.
Of course, societies and their norms are made up of individuals’ values and acts, so you could say we are all complicit in some way. That would deny differences in power, authority etc, though…
Power and authority are primarily at stake in this post and thread, ironically. These can be seen from different lenses. It’s often easy to take the neo-liberal view that each individual is equal in and of themselves. That’s true, theoretically, but it discounts inequities in class, status, opportunity and so on.
I don’t think you get to “change the conversation”.
Sorry, too late, I already have! People are engaging. It’s a difficult conversation and people are feeling uncomfortable, but that’s not “mowing the rest of you down.” I’m simply articulating a point of view that makes people think differently. I’m worthy of that as much as anyone is worthy of disagreeing. But I won’t stop presenting my view simply because people don’t like what I’m saying.
If history had been full of people who stopped challenging the status quo because it was unpopular, slavery would still be thriving, women wouldn’t have the vote, homosexuality would be illegal and gay marriage – well, we wouldn’t even have thought about it, would we?!
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Lilith __, in reply to
I’m not “bagging” individuals, just refering to a societal norm that has left disabled people disadvantaged and lacking control over their lives and resources, just like women, people of colour, religious minorities, sexual minorities etc etc have and still do experience.
Not sure who you're lecturing here, Like, you think this is news to us?
We are the people who would be your allies here, there's no need to be patronising.
I don’t think you get to “change the conversation”.
Sorry, too late, I already have! People are engaging.
Yeah, you're turning a healthy discussion into a brawl. Well done.
It’s a difficult conversation and people are feeling uncomfortable, but that’s not “mowing the rest of you down.” I’m simply articulating a point of view that makes people think differently.
No, you're not making anyone think differently, you're just making us feel angry. We have thoughts already, please respect that.
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Russell Brown, in reply to
Sorry, too late, I already have! People are engaging. It’s a difficult conversation and people are feeling uncomfortable, but that’s not “mowing the rest of you down.” I’m simply articulating a point of view that makes people think differently. I’m worthy of that as much as anyone is worthy of disagreeing. But I won’t stop presenting my view simply because people don’t like what I’m saying.
Of course. And you're welcome here.
If history had been full of people who stopped challenging the status quo because it was unpopular, slavery would still be thriving, women wouldn’t have the vote, homosexuality would be illegal and gay marriage – well, we wouldn’t even have thought about it, would we?!
But if anyone has challenged the status quo, surely it's David?
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diversitynz, in reply to
But if anyone has challenged the status quo, surely it’s David?
Well, that's the $1m question isn't it?! After reading about the likes of Parklands and the other support person recently convicted, I'd say no. I'd say he's shone a light on the tip of a very large iceberg - which is that there are a hell of a lot of disabled people living in situations of neglect and abuse, disguised as caring and do-gooding.
He may well have illuminated an awkward status quo that most people would prefer not to acknowledge. I don't think he's challenging it.
In case anyone is mistaken, I'm totally for disabled people having sex. I've written sexuality policies and done training for residential services that have had staff walking out in disgust. I've advocated for the MoH to fund sex workers, which they do.
I'm all for people having much, much more respectful, consenting, safe sexual expression and experiences, disabled or not.
Look, I could be completely wrong and Paul could be sweet as with his sex life. I'm simply responding to cues in David's story that, due to my professional background in counselling, social work and human rights, ring alarm bells.
Finally – and this is my final word because it's giving me OOS – I don't think David's story of his interaction with Paul is a good blueprint for "The Future of Befriending Disabled People."
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The Hidden Abuse of Disabled People Residing in the Community: An Exploratory Study
I lied about the final word. Just skimming the Executive Summary of this research points to what I'm saying. It even talks of the status quo, silencing and systemic failures.
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BenWilson, in reply to
I think it's worth noting that Paul is pretty high functioning intellectually disabled. He knows, for instance, when people owed him money. He had his own money from which he paid his bills. He was capable of calling up a newspaper to place an advertisement. He would:
discuss weather, shopping, TV, politics, the news, and his neighbours.
He's a person that advocated for his own independence and got it. He has a much higher level of agency than, for example, a child, or my intellectually disabled aunt. He's probably more responsible than a lot of hardened drunks. But he's still vulnerable.
That's a much less clear situation when it comes to the many questions you asked in your blog about how David should have acted. If we were talking about someone who is not technically disabled at all, but pretty slow witted, gullible and foolish, there wouldn't be the conundrum. If, upon asking if they were happy to have their story told, they said it was OK, without really understanding the consequences (and to be honest, who really does understand all consequences? I'd like to meet that person and become their disciple), then there wouldn't be any real squick in this story at all. How far are we from that person? It's a very hard question to answer, would take someone who knew the person intimately. It could be approached formally, like the needs assessments that I frequently do with ACC for my son, which take hours, and in the end they are basing most of their decision making on my judgment anyway.
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Well, that's another whew! Thanks for your thoughts. I should be used to the fact that knowing Paul means 'the hard stuff' comes with it, but I forget...
I agree, it is a complex business. I started off from the beginning of not wanting to pathologise Paul, make him a client, treat him with kid gloves, isolate him, or make him special. Therefore I found aspects of Philip's written response hard to deal with - sometimes Philip wanted it both ways, to berate me, while simultaneously giving me the benefit of the doubt. Sometimes in the one paragraph. Sometimes his obvious lack of the facts just bugged me (and his assumptions about the ones he had) but then I obviously did not write it well enough in the beginning. My only excuse is if I'd have explained everything it would have taken me much longer than the 3,000 words it took.
This misreading of things came in many ways - including about the conference call scenario. That and Paul's sexual life seem to have got all the reaction. I wouldn't have chosen to give Paul the Conferencing calls that he had, because I am probably a cautious person. Paul however enjoyed them. They were nothing much different (in mechanics) from the sex-line calls he voluntarily involves himself. He knows the routines. If they had just subjected Paul to abuse he wouldn't have countenanced them. They are generally good calls. I'm not party to them all. I sometimes hear about them. People, with the few exceptions I outlined, are generally very good. To be frank the calls aren't of much importance to Paul. They do stimulate him. They give him a bit of contact with the world. I do think that people are very willing to think ill, to imagine nastiness, when none exists. One thing I didn't emphasize enough was Paul's charm. He really is engaging and fun. He is as interested in you as you are in him.
The key thing, for me, is the fact that some of the responses here want to return Paul to a world where he is not the one in control. Paul has fought very long and hard to be himself - to live by himself, to control his world. I feel a number of responses here want to return Paul to somewhere he doesn't want to be.
I want to emphasize again I am not official. I am simply Paul's friend, as he is mine. Philip's list of problems that he found in my text just made me really glad that I do not belong to that world of 'official contact', and that I can act as a probably-flawed human being outside it. Outside it we can have friendship, respect, pleasure, drama, laughter, and all the human things.
Lots of things have happened to Paul in the time that I've known him. Some good, some bad. But like us all, he chooses to deal with them. He's the agent in his life. With his freedom comes responsibility but he deals with it. Some of you wanted me to draw lines where, for one or another reason, I had to be aware or make allowances or not do something. I don't do any of those things. I don't do it with my other friends - I don't do it with Paul.
I can only help, if asked. I can only fulfill a human function. I am there to talk with. I am there to talk. We share stuff in the complex world of Being. You’d have to ask Paul his opinion, but I suspect he’d say that it works. He’s ‘fired’ me. I’ve ‘fired’ him. We’ve had dramas like you wouldn’t believe. But we are still here and we like each other.
I agree it can be frustrating. And I think your frustrations mirror mine, at least sometimes. Paul, however, is living his life. I have to deal with it, so should you.
I wasn't advocating a programme or a strategy. I was simply telling the story of something which is for me a valued thing. I hope I'm not soppy about it and I like to think Paul has taught me some practical lessons in life. If anything I'd like it to be considered realistic.
And to go back to where I started, I’m not fond of caged birds.
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Russell Brown, in reply to
Finally – and this is my final word because it’s giving me OOS – I don’t think David’s story of his interaction with Paul is a good blueprint for “The Future of Befriending Disabled People.”
And yet they've been friends for 14 years. I'm not sure there's a manual for that.
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Paul does know David has written about their relationship and didn’t object, although given that he doesn’t read and doesn’t understand the internet, the idea of informed consent is difficult. But does that mean no one should be able to tell the story, ever? Or that David should have censored important parts of the story? I’m not sure that’s a good result.
Only people who know him can answer whether Paul can and has consented for elements of this to be told.
I'm not sure him being unable to read and understand the internet is a good answer though. Would he be happy if he was in a room of people and you started to read out bits of this story and he knew it was about him, even if he wasn't identified? If most of the people in the room were complete strangers to him?
My feeling is that there are parts of this story that need explicit consent before being put up on the internet, anonymous subject or not. David seems to have flitted around that question without answering it directly.
I'm not saying it's not insightful or interesting. Just that surely Paul has the same rights to informed consent (as much as that may be possible for him) as anyone else, and it's not clear to me if that's happened.
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Sacha, in reply to
I'm not sure there's a manual for that.
you, sir, are no social worker :)
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There's an idea that I quite like as a guide to all of this and that is the idea of 'right relationships'. Originally a Buddhist concept about our human and ecological interconnectedness, it has been developed by Michael Kendrick as a philosophical underpinning of the whole area of human services of disability support - but has much wider application. It is about ethics, respect and reciprocity, challenging power imbalances and speaking up about abuse (by people or organisations). He's written and presented about this overseas and in NZ (he's from the US) over the last decade. He gives checklists about how to get the relationship 'right' which could be useful in such situations as have been raised in this thread.
Probably a bit waffly for many posting here, but I have found it a useful concept.
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The power and beauty of friendship is that no one is "in charge". It requires mutual openness and vulnerability. It's dynamic and changeable. Friends listen to each other; nobody tries to "fix" anybody.
The institutional response to disability is so often to objectify, to treat a person as a set of "problems" to be solved.
Friendship is transformative on both sides. That's why David's story is so compelling, I think.
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Sofie Bribiesca, in reply to
Philip’s list of problems that he found in my text just made me really glad that I do not belong to that world of ‘official contact’, and that I can act as a probably-flawed human being outside it. Outside it we can have friendship, respect, pleasure, drama, laughter, and all the human things.
I like this too, what a wonderful account of you and your friends. Go and be well David.
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