Notes & Queries by David Herkt

Read Post

Notes & Queries: Paul

91 Responses

First ←Older Page 1 2 3 4 Newer→ Last

  • Hilary Stace,

    Regarding the point about how to tell the stories of disabled people including those who may be non verbal, here are two examples of how to do it well:

    People First NZ (2010) A place of our own; living with the legacy of institutionalisation (People First members tell their - sometimes quite shocking- stories to other People First members who are doing the interviewing. One interviewee at least does not use spoken words to communicate)
    Spectrum Care. (2010) Extraordinary journeys. (Several quite severely disabled adults who are clients of Spectrum Care have their stories told through a mixture of their own words, family members and other sources)

    Wgtn • Since Jun 2008 • 3199 posts Report Reply

  • Hilary Stace,

    Haven't read the report itself but this looks interesting http://www.scoop.co.nz/stories/PA1306/S00138/disabled-people-speak-out.htm

    Wgtn • Since Jun 2008 • 3199 posts Report Reply

  • diversitynz, in reply to BenWilson,

    So, really, flawed help is a lot better than no help.

    LOL. Nice one Ben. You’ve described, in 11 words, the entire disability support ethos in NZ.

    And before you say that I don’t have “to actually do it,” I recruit, induct and manage my support crew every day of every year. I also train, advise and help set up services in an attempt to improve the attitude of people who think disabled people are lucky to get what they’re given.

    You may as well say, “Bad driving is better than no driving.” Or, “Drunk driving is better than no driving.”

    It’s the “crap support is good enough” idea that causes the situations “people like Paul”, as you so generalise, end up in.

    "People like Paul" are as worthy of good friendship as anyone else. Someone, having put a story about their relationship with another person (not that person’s story) in the public arena, could be humble enough to realise they could make things better by reflecting and putting in a little more effort.

    Since Dec 2006 • 28 posts Report Reply

  • Islander, in reply to diversitynz,

    So, really, flawed help is a lot better than no help.

    Yep.

    I am visually disabled.
    The older I get, the worse my situation becomes.
    Because I still earn income from royalties - but not enough to pay for another cataract operation-- I am a looooong waiting list for that.

    In the mean time (do I mean the separation? YES!)
    I am fuckin' grateful for all the aids I do get.

    Annnnd- many people out there get really irritated as I bring out my various visual aids to go about everyday living-

    Ben & David have made really good points. You've made a narky unhelpful one.
    Bye bye-

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Russell Brown, in reply to diversitynz,

    So, really, flawed help is a lot better than no help.

    LOL. Nice one Ben. You’ve described, in 11 words, the entire disability support ethos in NZ.

    I don’t think that’s what Ben was saying. He also said:

    Every little moral conundrum pushes people a little further away.

    And I think there’s something in that.

    What David describes are incidents from a 14-year relationship. It is, as you say, a “blurry space”. He has written before with similar frankness about himself.

    I saw David last week and talked about it with him. The conference calls – orchestrated by the unmanageable ADHD friend whose name we can guess – were mostly, he said, as much a source of entertainment and contact for Paul as anyone else, and many of them became extended conversations. At other times, David was there and intervened.

    It’s okay to ask whether David should have intervened more strongly when it came to sex. But was that his job? Should he have overruled Paul’s apparent consent? Should Paul’s impairment have precluded sexual contact? Would involving the police against his wishes be right? Would it traumatise him? If David had rigorously observed boundaries with respect to Outline, would Paul’s life have been better or worse?

    As you note, some of the praise for the post has come from people with direct, family experience of disability – Ben and I included. I can’t speak for everyone else, but I think I responded strongly to the theme of agency and license. I’ve recently had to deal with a situation where some people – the last people you’d expect – robbed my older son of agency and it really pissed me off. I worry about my sons being isolated and living unnecessarily limited lives. I responded to the theme of license – the freedom to be wild, even if that implies risk. The rest of us get to do that. And the ability to be in the world, even if it is in strange ways.

    David didn’t write that post to provoke, or even to trigger discussion, although it’s clearly done both. Most people have liked it, and not for prurient or voyeuristic reasons. They feel they’ve been presented with a life they’d never considered, been made to think about things they hadn’t before. As one person said to me “I don’t want to read anything else today. I just want to think about that post.” I’m not saying any of the points you make are wrong – it’s not that simple. But I think we’re going to have to disagree on this one.

    Auckland • Since Nov 2006 • 22753 posts Report Reply

  • diversitynz, in reply to Islander,

    Ben & David have made really good points. You’ve made a narky unhelpful one.

    I beg to differ, with respect. Ben & David have made the same points that have been made for centuries and have led you to feeling grateful for something less than you deserve. I'm changing the conversation. I expect, like most changes in civil conversations, for it to be met with howls of protest.

    Since Dec 2006 • 28 posts Report Reply

  • Hilary Stace, in reply to diversitynz,

    Ben & David have made the same points that have been made for centuries and have led you to feeling grateful for something less than you deserve.

    I agree. And many people on this thread know about poor, inadequate, inappropriate or non-existent disability services. Yet we are still meant to be grateful. I have long admired Philip for his work speaking up about abuse of disabled people, often at great personal cost. In various ways, he is trying to change the paradigm.

    Wgtn • Since Jun 2008 • 3199 posts Report Reply

  • Islander, in reply to diversitynz,

    If you mean disabled people have had difficulties over millennia – why, yes!

    I deserve what a taxpaying citizen of ANZ should get -BUT- my visual disablilities
    have been ameliorated – by the State – since I was 7…

    how long – and to what extent- should fellow-citizens expect to pay for my inherent visual defects? No matter what I may contribute-

    and what exactly should I deserve?

    I am grateful I live in a civilised country where there is a social welfare system.
    That's all.

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • BenWilson, in reply to diversitynz,

    And before you say that I don’t have “to actually do it,” I recruit, induct and manage my support crew every day of every year. I also train, advise and help set up services in an attempt to improve the attitude of people who think disabled people are lucky to get what they’re given.

    Sorry to have misunderstood where you were coming from, although I didn't actually accuse you of not having to do it. I was saying that it's something I so frequently hear from people who don't - far less often from people who do.

    You may as well say, “Bad driving is better than no driving.”

    There are plenty of circumstances where that is true. If, for example, you are driving someone in a critical condition to a hospital.

    It’s the “crap support is good enough” idea that causes the situations “people like Paul”, as you so generalise, end up in.

    Jumping from "flawed help is better than no help" to "crap support is good enough" is a leap I didn't make. It's about as helpful as me saying that you're basically saying that David shouldn't have spent 14 years helping Paul at all. It does sound like that, but I think you didn't mean that. Obviously I think there should be a lot more support for Paul than there is.

    Someone, having put a story about their relationship with another person (not that person’s story) in the public arena, could be humble enough to realise they could make things better by reflecting and putting in a little more effort.

    You'll probably need to give an example of what you mean here. I fully respect your blog post, by the way, as I said, the issues are thorny. Paul is in a bit of a no-man's land when it comes to agency, so when you ask:

    And what of the men who had sex with the author's friend? Would they not possibly be guilty of sexual exploitation of person with significant impairment under s138 of the Crimes Act, where "[e]very one is liable to imprisonment for a term not exceeding 10 years who has exploitative sexual connection with a person with a significant impairment"? Did the author have a moral, if not ethical, duty to report these occurrences and to intervene and prevent them? Should these acts not be brought to the attention of police and investigated? Or doesn't it matter because the author's friend is disabled (and gay) and by putting the ad in the paper, he asked for it?

    ..I don't know the answer. But isn't the question tantamount to saying "Can Paul legally have sex with people of his choosing"? It would seem to me that he can, he has enough agency to make that decision. Just enough. He was, after all, placing the advertisements himself, repeatedly.

    Auckland • Since Nov 2006 • 10633 posts Report Reply

  • diversitynz, in reply to Russell Brown,

    I don’t think that’s what Ben was saying.

    I don't think Ben realised that's what he was saying ;-)

    Since Dec 2006 • 28 posts Report Reply

  • BenWilson,

    Ben & David have made really good points. You’ve made a narky unhelpful one.

    Thanks for the support Islander, but actually I disagree. DiversityNZ has good points too. He's just making his points strongly, which I take to indicate sincere belief in this case.

    Auckland • Since Nov 2006 • 10633 posts Report Reply

  • BenWilson, in reply to Russell Brown,

    As one person said to me “I don’t want to read anything else today. I just want to think about that post.”

    Yup, and DiversityNZ makes the same point himself in practically the opening of his own post. I agreed with this in particular:

    one that someone has had the courage to start it and to which I would be cowardly not to respond.

    Otherwise I wouldn't have responded to it. I probably should have responded on Diversity's site, but, well, Facebook? Not the audience I want to talk to. And it's responding to this thread, so it was the logical other place.

    Auckland • Since Nov 2006 • 10633 posts Report Reply

  • diversitynz, in reply to BenWilson,

    Sorry to have misunderstood where you were coming from, although I didn’t actually accuse you of not having to do it.

    All good. Just thinking ahead :-)

    “Can Paul legally have sex with people of his choosing”? It would seem to me that he can, he has enough agency to make that decision. Just enough. He was, after all, placing the advertisements himself, repeatedly.

    If placing flatmate ads is “having sex with people of his choosing”, then that indicates to me someone who hasn’t had a lot of opportunity to choose who they have sex with. I’m disabled and gay and I’ve never had sex with random people replying to flatmate ads. That’s not choosing who to have sex with. That’s having sex with people who choose to be exploitative.

    Since Dec 2006 • 28 posts Report Reply

  • BenWilson, in reply to diversitynz,

    That’s having sex with people who choose to be exploitative.

    It sounds to me like he was initiating it, much more than being exploited. On the first time, you could maybe call it an exploitation. But he kept at it. Then after a while decided it wasn't a good idea. In other words, he had consenting sex, which he effectively initiated, then learned that he didn't wish to continue doing that. It sounds like sexual exploration to me.

    Auckland • Since Nov 2006 • 10633 posts Report Reply

  • diversitynz, in reply to BenWilson,

    It sounds like sexual exploration to me.

    Well, that's the easier belief to choose to sit with.

    Since Dec 2006 • 28 posts Report Reply

  • BenWilson, in reply to diversitynz,

    I think condemnation is by far the easier position. It involves opting for a position of no risk of possible harm, at the "minor" inconvenience of no possible good. When it comes to sexual conduct, there's no shortage of people saying that other people shouldn't get what they want.

    Auckland • Since Nov 2006 • 10633 posts Report Reply

  • Dylan Bland,

    I’m glad that Philip took the time to respond properly to this article. Despite many people here feeling “inspired” by David’s “beautiful” story, it was in fact an intimate account of another person’s life written and published without consent. It outs the subject as a victim/survivor of rape and sexual abuse. Unacceptable in my opinion.

    Since Jun 2013 • 7 posts Report Reply

  • Russell Brown, in reply to Dylan Bland,

    Dylan, can you acknowledge that Ben and I are responding from direct, family experience of disability, and in good faith?

    Auckland • Since Nov 2006 • 22753 posts Report Reply

  • Dylan Bland, in reply to Russell Brown,

    My issue is with the article, and the personal aspects of it related to rape and abuse, that have been written and published without consent. As I stated from the beginning, I don't think it's another person's place to tell this story, and I feel it was only told because the subject is disabled.

    Of course I acknowledge that you have your own experience with disability, and certainly I acknowledge that you have responded in good faith. As stated in a previous comment, I also acknowledge the author probably well intentioned by writing this piece.

    Since Jun 2013 • 7 posts Report Reply

  • Sacha,

    Consent looks mighty problematic to me too, as I noted earlier. David responded above:

    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.

    David, beyond 'writing' did you try explaining it was like talking out loud to a whole lot of people about Paul's life and what he does? People he doesn't even know. Like you were walking down the street and saying "hey, let me tell you about my friend Paul".

    The response if you told people he enjoys sweeping floors or feeding ducks would be less alarmed than talking about his personal health or his sex life or harms he has experienced. I'm aware there are all sorts of gay culture layers as well even though I only vaguely recognise them as an outsider.

    Ak • Since May 2008 • 19685 posts Report Reply

  • Russell Brown, in reply to Dylan Bland,

    My issue is with the article, and the personal aspects of it related to rape and abuse, that have been written and published without consent. As I stated from the beginning, I don’t think it’s another person’s place to tell this story, and I feel it was only told because the subject is disabled.

    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.

    I thought the "We were happy here" passage was actually one of the most powerful parts of the story.

    Auckland • Since Nov 2006 • 22753 posts Report Reply

  • Sacha, in reply to Russell Brown,

    But does that mean no one should be able to tell the story, ever?

    This discussion has been really interesting around that matter.

    Ak • Since May 2008 • 19685 posts Report Reply

  • Dylan Bland, in reply to Russell Brown,

    But does that mean no one should be able to tell the story, ever?

    Quite possibly, yes. Most people who have experienced rape or sexual abuse choose not to have their story published in the media.

    Since Jun 2013 • 7 posts Report Reply

  • Lilith __, in reply to diversitynz,

    I beg to differ, with respect. Ben & David have made the same points that have been made for centuries and have led you to feeling grateful for something less than you deserve. I’m changing the conversation. I expect, like most changes in civil conversations, for it to be met with howls of protest

    Philip, I respect all the work you've done in this area, but I'm unclear what you're trying to achieve by bagging all of us here.
    We're here in good faith, many of us disabled ourselves and/or fighting battles for disabled ppl in our families and communities.
    I don't think you get to "change the conversation". You're welcome to state your own views and perspective, but not to mow the rest of us down. That's not what a conversation is.

    Dunedin • Since Jul 2010 • 3887 posts Report Reply

  • Lilith __,

    The issue of mental disability and consent is obviously tricky.
    Does the law effectively prohibit a mentally-disabled person from having a sex life?

    Dunedin • Since Jul 2010 • 3887 posts Report Reply

First ←Older Page 1 2 3 4 Newer→ Last

Post your response…

Please sign in using your Public Address credentials…

Login

You may also create an account or retrieve your password.