tag:blogger.com,1999:blog-35190738919360552512024-02-21T01:19:35.557+00:00Union of Disabled PeopleFor news, updates and comment on efforts to create a national Union of Disabled People (name subject to change)Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-3519073891936055251.post-66460280320729099202015-06-09T10:25:00.003+01:002015-06-09T10:25:32.244+01:00Links: Other ideas and discussionsSorry to have been away for a while; I was busy, then disheartened (more on which below), then ill. I'm still ill, but I'm spending some time on this. <br />
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So, first thing's first, there's some discussion on this whole idea going on at a new forum set up for the purpose, as well as the Google Group I set up. It can be found at <a href="http://ndorg.freeforums.net/" target="_blank">http://ndorg.freeforums.net/</a><br />
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Also, with a sad heart I share this valedictory message from someone who I've worked with before, and helped me a lot by letting me bounce ideas off her: <a href="http://loopys-rollingwiththepunches.blogspot.co.uk/2015/06/an-unfond-farewell.html" target="_blank">http://loopys-rollingwiththepunches.blogspot.co.uk/2015/06/an-unfond-farewell.html</a>. Spoonydoc was instrumental in the original 'spartacus report', <i>Responsible Reform</i>, and has been a key contributor in several other projects, including ones I've been involved in. She's also helped amplify many other projects, and contributed to discussions on many topics in activism. My feelings about the sort of response that has led to this reaction from Spoonydoc have already been covered in a post on this blog: <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/people-and-personalities.html" target="_blank">http://unionofdisabledpeople.blogspot.co.uk/2015/05/people-and-personalities.html</a>.<br />
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I'd also like to share ideas from another blogger, Mel, on the idea of creating this new organisation: <a href="http://thesocialworkerwhobecamedisabled.blogspot.co.uk/2015/06/union-of-disabled-people-my-ideas.html" target="_blank">http://thesocialworkerwhobecamedisabled.blogspot.co.uk/2015/06/union-of-disabled-people-my-ideas.html</a>. There's some definite similarities with my own thoughts there, including some I haven't shared here yet, but some definite differences as well. I encourage you to check them out.<br />
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Don't forget the Google Group as well - information is at <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/google-group-set-up.html" target="_blank">http://unionofdisabledpeople.blogspot.co.uk/2015/05/google-group-set-up.html</a>.Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-11570837920115948362015-05-21T16:33:00.000+01:002015-05-21T16:33:07.639+01:00Google Group Set UpOkay, given the difficulties with using IRC for the live chats, I've set up a Google Group for discussions. This can be accessed as an email list, or through the web interface, as you prefer. You do, however, have to have a Google account set up to join - this doesn't have to be a gmail address, Google allow accounts to be set up using other email addresses.<br />
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Alternatively, I can manually add people who don't have Google accounts (I think). Let me know if you want me to do that.<br />
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You can join on the web at <a href="https://groups.google.com/forum/#!forum/union-of-disabled-people-discussion/" target="_blank">https://groups.google.com/forum/#!forum/union-of-disabled-people-discussion/</a> or by email by emailing <span class="gI"><span><a href="mailto:union-of-disabled-people-discussion+subscribe@googlegroups.com">union-of-disabled-people-discussion+subscribe@googlegroups.com</a>.</span></span><br />
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<span class="gI"><span>Being usable as an email list makes it more accessible for visually-impaired users, among others. If you would prefer not to receive loads of emails into your inbox, there are several options. You may choose to receive digest emails (all of the activity for a certain time at once), you can access it over the web and optionally get notifications of new messages, or you can get all the emails, but set your email to automatically sort them into a folder.</span></span><br />
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<span class="gI"><span>IRC didn't work too well, but let's see how this works.</span></span>Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-23708960177851720122015-05-20T18:49:00.000+01:002015-05-20T18:49:14.529+01:00What's in a name?<div dir="ltr">
A surprising amount of debate that's happened since I first suggested this idea has been about the name. The name used on this blog is just the phrase I used to describe the idea, 'cause it also works as a name, and I felt like I needed to put <i>something</i> as the title.</div>
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Some people wanted something amusing or quirky - a name giving the initials "DLA", for instance, or "PIP". "Disability Enforcement Agency" was also suggested, though I suspect more in jest than seriously. Personally, I think serious is better than quirky, but I can still see the amusement in these ideas.</div>
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A more serious concern was about the word "union" - that it may create too much of an association with the trade union movement, and might thus be off-putting to conservatives (small c) - and even more so to Conservatives (big C). One self-described conservative, and Conservative voter, objected to that generalisation, and felt that it was the right word.</div>
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Another suggestion was to say directly, right in the name, what the organisation is for - Equality for Disabled People was suggested, and I turned it around and suggested Disabled People for Equality, emphasising that the organisation is intended to be by and for disabled people. I'm not sure, though, if that's a good summary when the idea is to be intentionally broad in scope. </div>
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I feel that anything we do ultimately comes down to equality, that's for sure, but I'm not sure it speaks to all those meanings for most people. Access to employment, transport, providers of goods and services, that's all equality to most people's understandings (excepting disagreement about vocabulary - more on which below). But would most people put the kind of social security system that works for us under the heading off equality? Those of us who think in terms of a disability equality sort of approach would, mostly, but I'm not sure many people think that way. Of course, it could serve a good purpose in promoting that sort of thinking.</div>
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Even the word equality can cause problems - some feel it too closely evokes the idea of equal (by which is meant essentially identical) treatment, and prefer 'equity' or 'fairness' - though I doubt the person on the Clapham Omnibus would understand those the way such people intended, either.</div>
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Why is a name so important to people in these discussions? I'm not sure. I think it's important that a name make a statement, and say what you stand for, what you do. I also think it's important not to give a wrong impression, or to confuse people. I don't know if people towards the 'right' (rather than left) end of the spectrum will feel uncomfortable with a union. I don't know if talking about equality in the name will confuse people.</div>
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So I have no answers here. I'd love to hear your thoughts in the comments.</div>
Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-38034837820854016582015-05-17T18:07:00.000+01:002015-05-17T18:07:14.027+01:00Reflections on the Live ChatsThursday and Friday just gone, I hosted two 90-minute live chats on IRC, the transcripts of which are available on this blog (<a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/transcript-of-live-chat-1.html" target="_blank">chat 1</a>, <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/transcript-of-live-chat-2.html" target="_blank">chat 2</a>). Various topics were discussed, but here I'm trying to reflect on them, what I think we can take from them, and where we might be going.<br />
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The first thing that's clear is that we need a better venue for discussions. After consulting some people about accessibility of different technologies with their impairments, and applying my own knowedge of the area (I do some web accessibility consulting), it looks like an email list is the best bet, but preferably one with a web interface for people who prefer to access things that way. As such, I'll look at setting up a Google Group for some free-form discussion later this week. The IRC channel may still get some limited use for really quick discussions, but I don't expect any more mass discussions there.<br />
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There are some things about which there was something close to consensus among those in the chat - we need the new organisation to be inclusive, without any hierarchy of disability, no prejudice between different impairment groups, and to be as safe a space as we can reasonably make it. We need to be able to raise money to work on whatever we decide to work on, and we need to be able to decide how to spend money in a way that everyone involved can be invested in.<br />
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<a name='more'></a>Another thing that seems clear to me is that it's a good idea to keep a wide focus, and not only work on opposing government cuts and proposed changes in law. While the threat we face from the new government has spurred us to this action, we don't have to be defined by it. As I reflect, I think there are two main benefits to keeping a wider approach. Firstly, it allows us to take into account all of the lives of disabled people - and our lives are not defined by our social security benefits, even for those of us who are forced to rely on them. Secondly, that wider focus allows us to draw in support from disabled people who don't want to focus on that, and prevents us being mischaracterised as a group of people defending their own financial self-interest. This is also supported by the recently-ex MP, and parliamentary champion of fellow disabled people Anne Begg, in comments she gave to DNS (see an earlier post on this blog, <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/should-we-be-afraid-and-other-reactions.html" target="_blank"><i>Should we be afraid? And other reactions to Anne Begg</i></a>).<br /><br />
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There are some big unanswered questions (along with all of the little ones). For instance, what place should carers have in this organisation? The general tendency (including in the opinion of some carers) is that they should not be members on the same terms as self-identified disabled people, though some (and not just some carers) feel they should be welcomed on an equivalent basis; all agree they should be welcome as part of the organisation, as far as I can tell. Similar questions arise as regards non-disabled, non-carer allies. I intend to write more specifically on this subject in the next few days to explore options, and reasons why each might be preferable - though I should be clear, it's a wide spectrum from "non-voting members" to "all members have equal status".<br />
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Another area touched on in the chats (if memory serves), and certainly in other places of discussion, is name. This seems like such a trivial, small thing, but it can be quite important. For instance, if we are to build an organisation for all disabled people, it has to be welcoming to people who are to the right of the political spectrum - and they won't like the idea of an organisation being a 'union', due to the association it creates with the trade union movement. This is another topic I'll write more on in the coming days, and I've heard some great (and some amusing) ideas that I'd like to share and discuss.<br />
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So, there's a lot of food for thought, and expect to see more posts from me on these topics, and others, and look out for the email list being set up!Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-13044510013796220192015-05-17T16:21:00.004+01:002015-05-17T16:21:56.276+01:00More background...Unsurprisingly, I wasn't the only person talking about this sort of idea in the aftermath of the general election. Jayne Linney posted thoughts on her blog, and in the interests of having everything to hand, I'm sharing the link here: "<a href="https://jaynelinney.wordpress.com/2015/05/10/what-now-togetherwecan/" target="_blank">What NOW? #TogetherWeCan</a>"Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-59688472877751258662015-05-16T20:20:00.000+01:002015-05-17T20:11:54.790+01:00People and PersonalitiesThere's an excellent piece at <i>Ramblings of a Fibro Fogged Mind</i> that's relevant to this endeavour: <a href="https://ramblingsofafibrofoggedmind.wordpress.com/2015/05/16/tarnished-with-the-same-brush/" target="_blank">"Tarnished with the same brush..."</a><br />
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For those of you who, for whatever reason, don't wish to click through and read the post, it is prompted by various rumours that are reportedly circulating (which I suppose means they are circulating, as a rumour of a rumour is still a rumour) that Sue Marsh is involved in this effort. Or that the people who <i>are</i> involved are people who worked with Sue, or under the same banner (the entirely accidental 'Spartacus'), and thus automatically suspect.<br />
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If that's just made you more confused, a little background seems in order. However, I don't want to open old wounds or invite new discussion of the original controversy, so I'll be brief - and ask you not to re-open this very old discussion in the comments. Comment on it, fine, but let's not have another big argument, is what I'm saying. Also, if I'm factually inaccurate, please don't bother to correct me if it's a minor thing - I'm glossing over some points for brevity.<br />
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Sue Marsh was a widely-respected (albeit not universally-agreed-with) and prominent activist on disability issues, especially social security, who emerged after the coalition government formed in 2010, like so many others. She, along with many others (perhaps most notably Sarah Campbell, and less notably myself) put together a report that took apart the argument for reforming DLA and replacing it with PIP. In a fairly successful attempt to make this go viral, it became known as the "spartacus report" - and the name, spartacus, stuck for anything the people involved did again, or that other people did with similar aims and principles (analytical, constructive, brutally honest). More reports, campaigns, and briefings followed, and while, as is inevitable in a large group of people, some activists and groups didn't agree with all methods or ideas from the Spartacus banner, we all rubbed along tolerably.<br />
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Then Sue, who hadn't worked regularly for a pretty long time due to her chronic illness, took a job (pretty well-paid) with Maximus, who took over the Work Capability Assessment (WCA) from Atos. The job is to do with improving the experience of people going through the WCA, but a lot of other disabled people and activists felt betrayed. I didn't, personally, but I absolutely understand why other people did, and still do. A lot of unpleasant things were said, which I'm not going to go over now - I imagine that those of you who don't know can imagine at least some of them.<br />
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But as the author of <i>Ramblings of a Fibro Fogged Mind</i> says, <br />
<blockquote class="tr_bq">
"Painting some one with the same brush as another is both cruel and
exactly what this government does… This disabled persons a faker so they
must all be…"</blockquote>
Even assuming for the sake of argument that what Sue did was wrong, even if we go so far as to say that it invalidated everything she did before, it's ridiculous, and damaging to our community, to somehow extend that to others.<br />
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Sue's not involved, to my knowledge. She amplified some stuff on Twitter at one point, but that's all.<br />
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But all this is leading up to my real point. This isn't about me, or Sue, or whoever is spreading rumours or speculating. This idea, this organisation we're trying to build (or dreaming of, or sceptical about) is about all disabled people, having the opportunity to come together and work on every issue that matters to us. I don't care if I never have a leadership role in the organisation - I just want to see it happen. I'm not eager to acquire a high-profile figurehead, though support from disabled celebrities is as welcome as it is from any other disabled person (or anyone else, for that matter).<br />
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If we make this happen, then we would welcome Sue as a member, because she is a disabled person. She would have no more or less influence than anyone else. I know some people aren't keen on Simon Stevens either, but if he wanted to join and speak his piece, cast his vote, then he's welcome as well. Whoever ends up in leadership positions, on the executive, will get there by convincing everyone (well, a voting majority) that they're right for the job. That's all.<br />
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We need to go beyond private (or public) vendettas, beyond personal pet issues, beyond factionalism and internal politics - these things are still going to exist, but we can't let them stop us from uniting as a group who share fundamental common interests. When we've set up this new organisation, even if every disabled person in the country joins up, those pet issues, vendettas and internal politics will still happen - and so will all the organisations and informal groups that are already working so hard for us. But we will have an inclusive, relatively safe space to engage together and direct our efforts, to speak up for us with one voice, admitting our disagreements but saying "we will not sit still" and speaking truth to power. <br />
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So don't worry about what Sue Marsh is doing, or what your favourite champion is doing, or what high-profile disabled people like Francesca Martinez or Tanni Grey-Thompson think we should do (though I'd be interested to hear what they think) - think about what you want, what you want us, as a community, to be, what you want us to do, and then I hope you'll see the need to come together and do what it takes.Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-73254478979317683292015-05-16T11:27:00.002+01:002015-05-16T11:31:19.237+01:00Should we be afraid? And other reactions to Anne BeggThe excellent John Pring of <a href="http://www.disabilitynewsservice.com/" target="_blank">Disability News Service</a> has <a href="http://www.disabilitynewsservice.com/dame-annes-warning-to-disabled-people-be-afraid-be-very-afraid/" target="_blank">spoken to Dame Anne Begg</a> since she lost her Commons seat in the recent general election. What she said has a lot of relevance to this effort.<br />
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She outlines the kind of things she thinks we can expect as this government makes changes to save money from what they call the 'welfare' budget (I prefer the term Social Security, for reasons on which several other people have written eloquently) - restricting eligibility for PIP, and taxing PIP, seems to be ones she feels are particularly likely. She also tells us we need to be afraid.<br />
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I'd say that we need to know what's likely coming, and being afraid is a natural consequence of that. But we shouldn't stop at being afraid. I don't claim to be contradicting Anne Begg here - her interview goes on to say there seems "<span style="font-size: 100%;">to be a need for an “effective voice” to speak for the different communities of disabled people", which is what I hope we can achieve with a union (or whatever we decide to call it). She also suggests "a </span><span style="font-size: 100%;">campaigning approach centred on
realism and pragmatism, and developing a “common voice so it is stronger
and louder” and has “very clear achievable aims”" - a goal I think is reflected in the <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/my-thoughts-principles-for-union-of.html" target="_blank">draft principles</a> I have shared.</span><br />
<span style="font-size: 100%;"><br /></span>
<span style="font-size: 100%;">I absolutely agree with Anne Begg on this:</span><br />
<blockquote class="tr_bq">
<span style="font-size: 100%;">“You
can always have your wish-list but what you probably need are some
identifiable, containable, achievable goals that you can start to build
up your confidence with.</span>
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<div style="text-align: justify;">
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<div style="text-align: justify;">
<span style="font-size: 100%;">“That’s a slow process, but if you start to get results and have an impact then people start to sit up and listen.”</span></div>
</blockquote>
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This is relevant to our endeavour in two ways. Firstly, it applies to the strategy and approaches we take once we get going - and I've tried to reflect that approach in the draft principles. It also applies to the setting up of an organisation in the first place - not so much that we need to walk before we try to run, but that we need to work out how to build our legs. We need to get something together, and quickly, to use the momentum that's out there in the community and before we can be too preoccupied with details that can wait until later, and that spending too much time on now will just lead to argument and recrimination.</div>
Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-70206811414118031882015-05-15T19:36:00.005+01:002015-05-16T16:18:51.883+01:00Transcript of Live Chat 2<i>This is a full transcript of the moderated chat of Friday May 15th.
It has not yet been cleaned up for readability - this is exactly as it
appeared to people in chat. I plan to clean it up to make it more
readable later.</i><br />
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May 15 17:38:18 <SamBC> Well, welcome all to this second chat. I'm not assuming everyone was here yesterday, so we might cover some of the same ground.<br />
May 15 17:38:23 * SamBC has changed the topic to: Live chat on setting up a union of disabled people Friday 15th May NOW | Channel currently MODERATED | Updates at http://unionofdisabledpeople.blogspot.co.uk/<br />
May 15 17:38:39 <SamBC> But we will hopefully build on yesterday as well, and cover some different topics.<br />
May 15 17:38:50 <SamBC> The transcript of yesterday is up on the blog.<br />
May 15 17:39:08 <SamBC> This chat is moderated - meaning that anything you say can only be seen by moderators, which today is me.<br />
May 15 17:39:38 <SamBC> I will copy and paste questions, comments, ideas etc for everyone to see - meaning that my name will appear, then the name of the person who said it, then the message.<br />
May 15 17:40:04 <SamBC> I may decide to give 'voice' to one or people temporarily, to allow for slightly more direct back-and-forth. We'll see how it goes.<br />
May 15 17:40:21 <SamBC> This is just done to stop it getting too 'busy', so people can follow it slightly more easily.<br />
May 15 17:40:28 * iNgobe (5165c830@gateway/web/freenode/ip.81.101.200.48) has joined<br />
May 15 17:40:42 <SamBC> The format isn't great to follow it easily, but it would be even harder if everyone were talking at once.<br />
May 15 17:41:09 <SamBC> So, once again, welcome everybody! Does anyone have any topics they'd like to cover today?<br />
May 15 17:42:26 <SamBC> <becca_boot> Have we got any specific or general goals for the union/thing yet?<br />
May 15 17:42:33 <SamBC> <Spoonydoc> two things. how are we going to be different to anyone else out there? how do we plan to attract members?<br />
May 15 17:42:54 <SamBC> I think those two are pretty related, at least the first part of Spoonydoc's question is related to becca_boot's.<br />
May 15 17:43:13 <SamBC> <LizzieC> would this be a union of people with physical disabilities only or are those with mental illness etc welcome too?<br />
May 15 17:43:25 <SamBC> And that connects to it a bit, too...<br />
May 15 17:44:23 <SamBC> <Jan777> And those with chronic illness?<br />
May 15 17:44:38 <SamBC> <becca_boot> I would not be comfortable if any type of disability were to be excluded. Especially learning disabilities.<br />
May 15 17:44:48 <SamBC> I agree with becca_boot on that. It's all included.<br />
May 15 17:45:35 <SamBC> In case people didn't see it yesterday, I've written some rough ideas on principles I'd like to see the union based on: http://unionofdisabledpeople.blogspot.co.uk/2015/05/my-thoughts-principles-for-union-of.html<br />
May 15 17:45:42 <SamBC> (now with added commentary)<br />
May 15 17:46:01 <SamBC> So that has a working definition for disability in it - a very inclusive one.<br />
May 15 17:46:09 <SamBC> <LizzieC> how do we define disability? Is self identification ok, or would one have to be in receipt of benefits, such as ESA/DLA/PIP?<br />
May 15 17:46:28 <SamBC> Given how hard benefits are to get, I think self-identification is the fairest way to do it.<br />
May 15 17:46:40 <SamBC> <Spoonydoc> reading yesterday's transcript, the equality act definition was mentioned. Is this what we are thinking of going with?<br />
May 15 17:48:15 <SamBC> <Spoonydoc> reading yesterday's transcript, the equality act definition was mentioned. Is this what we are thinking of going with?<br />
May 15 17:48:28 <SamBC> I think it needs to encompass that, but be more than that.<br />
May 15 17:48:47 <SamBC> <eskimogremlin> it has to be self identified as disabled<br />
May 15 17:48:58 <SamBC> <Spoonydoc> I would definitely not be happy with benefits coming into the equation in any way. The only reason the equality act definition is good is thatmit helps some people who often traditionally fins it hard to identify asmdisabled but mighy want to or need to.<br />
May 15 17:49:31 <SamBC> <becca_boot> I'd say self identification is better. Benefits isn't great as lots of people with chronic illnesses and other disabilities fall through the gaps of disability benefit.<br />
May 15 17:50:13 <SamBC> So, I'd say we have to be based on self-identification, and have to give people guidance what it means so they can be confident that they aren't wrong to include themselves - or to encourage those who aren't entirely comfortable with the label 'disabled'<br />
May 15 17:50:45 * iNgobe (5165c830@gateway/web/freenode/ip.81.101.200.48) has left<br />
May 15 17:50:56 <SamBC> There have been more comments agreeing that benefits are a bad way to do it, I'm just not copying them all in because it makes things a bit busier :)<br />
May 15 17:51:07 <SamBC> <Spoonydoc> i come across people, particularly woth mental or chronic illness who ask "can i call myself disabled?" Showing them the EA definition in those circumstances is helpful. we dont want to push away those who are in the early stages of their "journey"<br />
May 15 17:51:20 * iNgobe (5165c830@gateway/web/freenode/ip.81.101.200.48) has joined<br />
May 15 17:51:25 <SamBC> I agree that's a strength of the EA definition - but it's also very legalistic (for obvious reasons)<br />
May 15 17:52:45 <SamBC> <becca_boot> I like the definition of disability in the principles you wrote Sam. It could be expanded with a little more of the equality act stuff to open it up more to people usually shy of using disabled as a label<br />
May 15 17:52:54 <SamBC> <Jan777> Anyone whose day to day life is adversely affected by their condition?<br />
May 15 17:53:18 <SamBC> I'm definitely hearing how the definition I've written could be improved. I tried to encompass some of the spirit of the EA definition, but I agree it isn't quite there.<br />
May 15 17:54:24 * DavidGillon (5ceee065@gateway/web/freenode/ip.92.238.224.101) has joined<br />
May 15 17:54:54 <SamBC> <becca_boot> or perhaps "adversely affected by their condition OR the way society impacts on their condition" It allows for people who's main problems are their condition/impairment and people who's main problem is society. And everyone inbetween<br />
May 15 17:55:14 * spoons4all (586d5570@gateway/web/freenode/ip.88.109.85.112) has joined<br />
May 15 17:55:42 <SamBC> That's a good point, becca_boot. I'll play with some words after the chat finishes and see what I can come up with, but I think making it clearer that anything that affects your life counts, while keeping the idea that society needs to be fixed.<br />
May 15 17:56:01 <SamBC> After all, a lot of us would love for *us* to be fixed, but that isn't on the cards - and isn't our responsibility.<br />
May 15 17:56:57 <SamBC> Going back to something else someone mentioned at the beginning, but I hadn't relayed yet...<br />
May 15 17:56:58 <SamBC> <eskimogremlin> i think we need to focus on what we would love it to be money no object etc but what we should focus on now with limited resources and people<br />
May 15 17:57:01 * Jan777 has quit (Quit: Page closed)<br />
May 15 17:57:09 <SamBC> <Jan777> Sorry I have to go now - looking forward to write up & future<br />
May 15 17:57:27 <SamBC> <Spoonydoc> agreed. all the right ideas are here. But it is just important to cater both for those who easily identify as disabled and those who dont yet.<br />
May 15 17:58:00 <SamBC> Responding to eskimogremlin, I think what we should do is work out where we want to end up (a strong, inclusive and functional organisation), and then our short term goals are "how do we get there?"<br />
May 15 17:58:41 <SamBC> (we'll come back to the definition in a bit, I just didn't want to completely forget eskimogremlin's question asked near the beginning)<br />
May 15 17:59:24 <SamBC> If we want to have a broad aim, which I think we do, then the first priority has to be building the organisation rather than having an impact beyond that.<br />
May 15 18:00:08 <SamBC> But I, personally, think that an organisation like this will have a positive impact at first just by existing - small, but important.<br />
May 15 18:00:46 <SamBC> iNgobe has pointed out how awkward this system is for some users; I agree, and will try to have something better for next time we try to do something similar - this is what we could get up and working in a couple of days.<br />
May 15 18:01:05 * iammrj has quit (Ping timeout: 246 seconds)<br />
May 15 18:01:09 <SamBC> <becca_boot> That sounds like a good plan. I tend to get a bit visual with these things and use a flow chart for goals & action planning.<br />
May 15 18:01:21 <SamBC> That sort of planning is easier once we have some degree of organisation behind it, I think.<br />
May 15 18:01:48 <SamBC> Going back to definitions, at least briefly...<br />
May 15 18:01:50 <SamBC> <eskimogremlin> i think that to include everybody it has to be understood that the social model of disability is only part of it that even if all bariers where removed some disabled people would still be restricted by there condition i.e pain, fatigue but I think we should say these barriers should be removed<br />
May 15 18:02:39 <SamBC> Absolutely, eskimogremlin - it gets a bit academic, but the social model can be made to fit that if you try. That's the thing, though - it's academic.<br />
May 15 18:03:18 <SamBC> The social model is a sociological construct, models are ways of looking at and treating reality for analytical purposes - they aren't reality themselves. I think a practical definition can't be the same as an academic one.<br />
May 15 18:03:51 <SamBC> So, there are a couple of related comments I'm going to relay now and try to address...<br />
May 15 18:04:00 <SamBC> <DavidGillon> I've been trying to think of the name of an existing supposed umbrella group since Sam mentioned this and it just came to me, British Council of Disabled Ppl<br />
May 15 18:04:07 <SamBC> <iNgobe> I joined this group primarily because as an activist for disability rights I've found that disability groups are very divided and thus have far less power, and less impact in petitions or actions, so there is a desperate need for a uniting group or umbrella group. Is that not what this group intends to be cf comments about 'small impact'?'<br />
May 15 18:05:08 <SamBC> So, to my mind there are two things a national group could be. UKDPC are an example of an umbrella group - their members are groups, and they try to support and coordinate them. What I've been thinking mostly in terms of is a national members group, directly controlled and run by members, not members organisation.<br />
May 15 18:05:37 <SamBC> An organisation we create could do either of those, or even try to do both, if it's a members group that also serves as a forum and connection for other groups.<br />
May 15 18:06:06 <SamBC> <DavidGillon> And a quick google shows there's also the UK Disabled Ppl's Council (I sense a schism in their history), We need to work out what groups are out there<br />
May 15 18:06:14 <SamBC> <DavidGillon> In fact getting existing groups in touch with each other might be most useful thing this could do,<br />
May 15 18:07:15 <SamBC> Personally, I think that if we get a strong basic organisation up, with plenty of members, that puts us in a strong position to work as an umbrella group as well. To go to existing orgs and say "we're here, we want to help you all" to existing organisations.<br />
May 15 18:07:27 <SamBC> Even if it isn't by being a formal umbrella organisation, we can still do that.<br />
May 15 18:07:35 <SamBC> <iNgobe> A truly unifying group would not have so much focus on 'eligibility' and by being open to anyone who wanted to join would encourage supporters, able bodied activists and those with all forms of disabilites to join<br />
May 15 18:08:18 <SamBC> iNgobe, I agree with that as far as 'eligibility' goes, I would want to welcome allies (and especially carers) as members, but I think it should be disabled-led.<br />
May 15 18:08:38 <SamBC> So we have to have an idea what we mean by disabled, even if it's just to support people in self-identifying.<br />
May 15 18:08:49 <SamBC> <becca_boot> Yes. Getting different groups in touch would be helpful. My experience has been that groups which don't normally work together are more willing to do so within a umbrella organsiation.<br />
May 15 18:08:57 <SamBC> <eskimogremlin> i think an umbrella group is needed more than duplicating whats already been done<br />
May 15 18:10:30 <SamBC> If anyone has tried to make a national members group before, I've not heard about it. Now, that doesn't mean it's not happened, I'm not an expert in the disabled people's movement. But it does mean it's not having the impact we want.<br />
May 15 18:11:50 <SamBC> So, I don't want to duplicate what's been done - this hasn't been done, at least not successfully. However, I don't want to be duplicating the work others are doing. DPAC and BT have great direct action on social security going on, so if we do make this organisation, I wouldn't want to see it duplicate that - we'd support DPAC and BT in the direct action on social security, rather than take it over or duplicate it.<br />
May 15 18:12:13 <SamBC> <iNgobe> The biggest difficulty I face in gathering info for campaigns is the fact that many disabled are hiding away (from public hatred of those who don't work) while disability activists who've fought hard for their special need to be recognised are fearful of others claiming the healines. Efforts to unite us with a common aim of help for ALL would be far more successful as we'd have greater numbers<br />
May 15 18:12:45 <SamBC> iNgobe, the central aim I would go with, as mentioned in the rough principles I've shared, is "to improve the lives of disabled people in the UK". ALL disabled people.<br />
May 15 18:13:12 <SamBC> Quick sideline into carers...<br />
May 15 18:13:19 <SamBC> <eskimogremlin> i cant see why there cant be a carers group that associated with ours or alongside even in the future<br />
May 15 18:13:26 <SamBC> <eskimogremlin> but that would be if carers would want to join along side it couldn't be seen as carers speaking for disabled ppl but with us<br />
May 15 18:14:00 <SamBC> (Principles are on the blog, I'll share the direct link again in a minute)<br />
May 15 18:14:32 <SamBC> I think carers have a special place in the disablity movement and community, but that should never be speaking *for* us (the situation for disabled people who truly can't speak for themselves is complicated, and I'm sidestepping it for now)<br />
May 15 18:15:39 <SamBC> If they want an organisation focussed on their needs, they should have a separate organisation - but because of the impact our lives have on each other, they should absolutely be part of the organisation, in a structured way.<br />
May 15 18:16:00 <SamBC> <iNgobe> Why this focus on who to exclude?<br />
May 15 18:16:34 <SamBC> iNgobe, I don't think that's what we're doing. The question about "what do we mean by disability" is important far beyond membership - it's about what problems is the organisation trying to solve.<br />
May 15 18:16:50 <SamBC> So, I would accept ANYONE as members. Full stop.<br />
May 15 18:17:22 <SamBC> But there has to be something to ensure that disabled people are in control - "nothing about us, without us". I don't want well-meaning non-disabled people deciding what's important for us.<br />
May 15 18:17:34 <SamBC> But I do want them to be involved, and engaged, and have a voice within the organisation.<br />
May 15 18:18:03 <SamBC> And I want carers to have a strong voice - still not being in charge, but carers are 'special' among other allies.<br />
May 15 18:18:36 <SamBC> <DavidGillon> There is a potential problem with allowing carers equal membership which can be seen with Autism Speaks. a massive parent controlled charity in the states that portrays ppl with autism in an extremely negative way<br />
May 15 18:18:42 <SamBC> That's a great example, DavidGillon<br />
May 15 18:18:51 <SamBC> <techiecarer> Could always do a weighted voting system on any decisions? (e.g. carers and affiliates votes count as 1 vote, disabled people as 2 votes)<br />
May 15 18:19:01 <SamBC> That's one option I've been thinking of, techiecarer<br />
May 15 18:19:34 <SamBC> It has to be communicated well - we're not saying that non-disabled allies are less than us, but this is *about* us, not them, so we have to have control, same as any other group for people who suffer discrimination.<br />
May 15 18:19:53 <SamBC> <becca_boot> So would having three types of membership be helpful? "disabled", "carer/enabler" and "ally"<br />
May 15 18:20:09 <SamBC> <DavidGillon> My preference would be to have carers as non-voting, but participating observers<br />
May 15 18:20:49 <SamBC> So, I've been thinking along the lines becca_boot mentions. When people join, ask them if they're disabled, and if they are a carer for someone who's disabled.<br />
May 15 18:20:56 <SamBC> If they're disabled, they are fully voting.<br />
May 15 18:21:12 <SamBC> If they're not, and they're a carer, that's another category, and people who are neither are a third category.<br />
May 15 18:21:42 <SamBC> And they'd vote differently. I'm not sure I'd go as far as DavidGillon and have them not vote at all, but I'd want the votes to be constrained so they could never dominate even if there were 10 times as many carers as disabled people.<br />
May 15 18:22:44 <SamBC> It gets a lot of flack, but something like the Labour party's leadership election system might work. They take the votes from people in different groups and scale them to fixed proportions - for them, all MPs share 30% of voting power, all trade union members another 30%, and regular members another 30%. That's pretty broken in their case, but something similar could be done.<br />
May 15 18:22:57 <SamBC> <iNgobe> That 3 way division sounds OK to me. Rules can always be rethought later. If there was time to delve into issues such as why make clear-cut divisions between groups of people I'd query those descriptors as people are mixed and change, but not right now.<br />
May 15 18:23:33 <SamBC> <DavidGillon> Split voting - the disabled vote sets policy, the ally vote comments on policy.<br />
May 15 18:24:03 <SamBC> I do want to recognise carers in a structured way - for example, having a spot on the executive just for them, and only carers vote for them. One among however many won't have much impact, but will make sure they have a voice.<br />
May 15 18:25:37 <SamBC> <techiecarer> Just a note, Labour have just abolished that system for the One Member One Vote system<br />
May 15 18:25:57 <SamBC> I'd heard that... then it was still there when I looked up their rule book. But that's neither here nor there when using it as an example :)<br />
May 15 18:26:30 <SamBC> <DavidGillon> 'Nothing for us, without us' can be read several ways, one of those is that we should set policy, I'd want the carer voice heard, but I'm exceptionally wary of allowing them input - their experience isn't ours, even if it is related,<br />
May 15 18:26:50 <SamBC> Indeed. Perhaps voting rights would depend on what was being voted for.<br />
May 15 18:27:00 <SamBC> <iNgobe> Is it necessary to talk about this fledgeling tiny group as though it was a political party with members battling for influence when it doesn't even have members yet? Wouldn't a more welcoming 'equal votes for all members' attitude encourage growth and effectiveness more quickly? This could be revisited IF it becomes necessary<br />
May 15 18:27:29 <SamBC> I think embedding the idea that the group is disabled-led from the beginning is important. Just saying it's disabled-led doesn't make it happen.<br />
May 15 18:27:45 <SamBC> <techiecarer> Oh of course, just noting it as I'm a Labour member and we just had it confirmed today because of the upcoming leadership elections that the system had been changed. I still think the electoral college system would work better here instead of OMOV<br />
May 15 18:28:24 <SamBC> <iNgobe> I'm not sure what you're imagining this group actually doing if it isn't activism to change current policies, and that requires simply the largest loudest voice we can muster<br />
May 15 18:28:38 <SamBC> <DavidGillon> Ignobe - I'm afraid I think this is a vital point, non-disabled ppl, however well meaning, can have utterly wrong ideas about disability<br />
May 15 18:28:46 <SamBC> <becca_boot> I would be very worried about equal votes for all. All it takes is 1 or 2 carers or allies to join per disabled person and then disabled people quickly lose the balance of power.<br />
May 15 18:29:06 <SamBC> There's activism and activism - and the more people the better for almost all sorts of activism.<br />
May 15 18:29:24 <SamBC> <techiecarer> (I say this as someone who is strictly a carer only and would not want an equal vote as I do not think it is right for me to)<br />
May 15 18:30:48 <SamBC> I mean, there's direct action (and when it comes to social security, that's already well-covered), there's lobbying, there's research and analysis to support lobbying.<br />
May 15 18:30:58 <SamBC> <becca_boot> For activism the more people the better - that's true. But for policy setting and steering you need people who it's about, who it will have the major impact on, who's lives you're trying to help.<br />
May 15 18:31:05 <SamBC> <DavidGillon> We just need to look at Autism Speaks to see how destructively wrong carers can be - which is not to say that all carers are wrong, just that there is an important issue here<br />
May 15 18:31:16 <SamBC> <iNgobe> But here you are involved in the set up of this group. this supicion and distrust is the downfall of small activist groups and the only reason a UNITED group is needed<br />
May 15 18:32:17 <SamBC> I don't think this is suspicion and distrust. It's practical and a matter of principles - we understand our lives better than carers or allies do. So we want carers and allies involved, and able to speak, but not to speak FOR us.<br />
May 15 18:32:28 <SamBC> <techiecarer> I am only here because my partner is also here (eskimogremlin). I will happily leave if anyone would prefer.<br />
May 15 18:33:05 <SamBC> techiecarer, I don't think that's necessary - even the people who are most firm about carers not having voting influence seem happy with them having the chance to speak :)<br />
May 15 18:33:19 <SamBC> <DavidGillon> I think a parallel might help. If you were setting up a BME group, would you expect white people to have an equal voicee?<br />
May 15 18:33:34 <SamBC> <iNgobe> I personally couldn't care less how misguided or able-bodied anybody is if they want to help diabled peope achieve quality of life. Mistaken views and intergroup disagreements are lower order concerns in the face of inhumanity from the govt<br />
May 15 18:33:51 <SamBC> (sorry, a couple of messages are out of order - iNgobe's was before DavidGillon's)<br />
May 15 18:34:19 <SamBC> This isn't about not having carers and allies involved - it's about them not being able to control the organisation.<br />
May 15 18:34:42 <SamBC> That's all.<br />
May 15 18:34:47 <SamBC> <iNgobe> I Don't prefer! I really value your input as much as that of anyone disabled and worry about the course of this convo as I had so hoped this wasgoing to be the new unison of disabled groups that is so sorely needed<br />
May 15 18:35:19 <SamBC> I don't think it's realistic to unite all the existing groups - but uniting most of the people, that we *can* do, I firmly believe.<br />
May 15 18:35:42 <SamBC> And from that will flow as much unity between organisations as we expect.<br />
May 15 18:36:16 <SamBC> Look at feminism... there are national and regional groups that have differences in how they do things. There's even fighting between them. That doesn't stop each organisation having a voice and a place. I hope we can be more united than that.<br />
May 15 18:36:25 <SamBC> <DavidGillon> iNgobe, might help to take a look at Autism Speaks and the 'Actually Autistic' campaign disabled ppl are having to run against them to understand the concerns here.<br />
May 15 18:36:58 <SamBC> Put it this way... should we really have to accept non-disabled people *telling us what to do* in order to have them support us? I think if the answer is yes, we've already lost.<br />
May 15 18:37:18 <SamBC> That's all the question of disabled versus ally members is about.<br />
May 15 18:37:27 <SamBC> <Pip> It seems it's about the basic premise, that this would be by us, for us, not a charity or similar.<br />
May 15 18:37:31 <SamBC> Exactly, Pip, thank you.<br />
May 15 18:38:50 <SamBC> <iNgobe> A lot of groups that have been campaigning despite severe disabilities for years are worn out and discouraged. they already have a following & supporters but can't achieve any greater influence. They are v wary of other groups benefiting from their work, but without greater unity are lost<br />
May 15 18:39:18 <SamBC> So, that's something we can do - bring resources (if we're successful) and weight of numbers (thus credibility) to existing campaigns. As well as doing new tings ourself.<br />
May 15 18:39:35 <SamBC> <Pip> But certainly, I'd hope we'd have lots of inclusion for carers and support services etc.<br />
May 15 18:39:43 <SamBC> <Pip> I mean, support for our carers. Should have put that better.<br />
May 15 18:39:54 <SamBC> <Pip> I mean, support for our carers. Should have put that better.<br />
May 15 18:39:54 <SamBC> <Spoonydoc> I really want carers as members. But they should not get final say on a decision which ultimately is about disabled people.<br />
May 15 18:40:13 <SamBC> <iNgobe> It may be hard work to persuade them, but ultimatley we will all benefit if and only if we join together to support one another. Otherwise this group like all the others will be another lost cause<br />
May 15 18:40:37 <SamBC> I think existing and having some legitimacy will make it easier to persuade other groups to work with us - but I could be wrong about that.<br />
May 15 18:40:46 <SamBC> <iNgobe> What decisions are thesse you are talking about? This group is never going to become a government?<br />
May 15 18:41:33 <SamBC> Any organisation has to make decisions. What to do with resources, what to prioritise, will it be organisational policy that there should be more disabled people in elected office? Will it be policy that there should be proactive enforcement of the Equality Act?<br />
May 15 18:41:41 <SamBC> <DavidGillon> I think we all want carers as members, but with ally status, to reflect the primacy of disabled people in a DPO<br />
May 15 18:42:00 <SamBC> Along with decisions like "who will be on the executive for this organisation"<br />
May 15 18:42:26 <SamBC> <techiecarer> If the electoral college idea is still the main one, maybe the disabled people college should have a 51% vote share, with the rest shared amongst the carers and affliate/allies colleges. That way, disabled people always have the overriding majority.<br />
May 15 18:42:53 <SamBC> There are lots of options for how to work the numbers - and maybe that would need to be a decision taken nearer before (or after) the organisation is formally set up.<br />
May 15 18:43:01 <SamBC> <Spoonydoc> there are many issues facing disabled people. Even deciding which ones we want to tackle as a priority is a "decision"<br />
May 15 18:43:30 <SamBC> If allies can't get behind us without being given the opportunity to tell us what we should be doing, are they really allies?<br />
May 15 18:43:43 <SamBC> <DavidGillon> Maybe DPULO clarifies intent, Disabled People's User Led Organisation, even if we'd be more members than users<br />
May 15 18:44:50 <SamBC> iNgobe> I think you are making a huge mistake in believing that 'disabled people' all share the same values while carers or other groups don't. In fact people with disabilities, just like peolpe without them are hugely vastly different, and because they have been so targeted by hate speech, are now extra 'jealous' of one another<br />
May 15 18:45:09 <SamBC> We're not saying disabled people all share the same values - but we do all have experience of being a disabled person. Different experience, but experience *of that*<br />
May 15 18:45:49 <SamBC> (The principles I mentioned earlier: http://unionofdisabledpeople.blogspot.co.uk/2015/05/my-thoughts-principles-for-union-of.html)<br />
May 15 18:45:56 <SamBC> <Spoonydoc> trust me, i dont think we share the same values. I have large experience of that.<br />
May 15 18:46:38 <SamBC> <iNgobe> If there were a large number of people with one condiotn voting for their needs to be prioritised, this would reduce the attention to those with minority conditions. In fact carers & disabled will have a mix of views but some will be more selfish than others<br />
May 15 18:46:58 <SamBC> That is a very good point - not the carers bit of it, but that we have to be aware of the 'tyranny of the majority'<br />
May 15 18:47:34 <SamBC> That'll take a lot of thought to sort out in a good way. One way to balance it is with strict rules to prevent it; another is with a strong executive with some guarantee of balance. Neither of those is very workable.<br />
May 15 18:47:45 <SamBC> <iNgobe> Why one vote one member is best<br />
May 15 18:48:10 <SamBC> OMOV doesn't prevent a tyranny of the majority. Trust me, I've been there. In this case, it would just expand the possible groups that could have that majority.<br />
May 15 18:48:18 <SamBC> <DavidGillon> That's the 38 Degrees problem I pointed out yesterday, which I think means giving the exec a mandate to work with the vote, but not be bound by it<br />
May 15 18:49:18 <SamBC> I would be quite happy if the organisation started with restricting most votes to disabled people, and one of the first motions voted on once it's up and running were to give carers and allies equal votes - provided it started from the position of the disabled members being the ones to make that decision.<br />
May 15 18:49:31 <SamBC> <DavidGillon> By which I mean if one group is dominating voting to exclusion of other voices, the exec would be mandated to ensure those voices are heard, not drowned out<br />
May 15 18:49:36 <SamBC> <eskimogremlin> I think that this needs to be discussed in a forum or such along with a ton of different issues<br />
May 15 18:49:50 <SamBC> I think eskimogremlin has a good point - we're getting into more detail than is ideal in this format :)<br />
May 15 18:50:03 <SamBC> But it's highlighted a difficult issue (or set of issues) that will need to be thought of.<br />
May 15 18:50:10 <SamBC> <Spoonydoc> so what is next step.<br />
May 15 18:50:40 <SamBC> Well, the very next step is I publish the transcript of this moderated chat (so, what you all saw, rather than the complete feed of everything - though not that much was missed out) :)<br />
May 15 18:50:46 <SamBC> At least, that's my next step :D<br />
May 15 18:51:23 <SamBC> The next thing I will do, in terms of the idea for this organisation, is try to write up some notes about all of this, working it into a readable whole - from last night as well as tonight.<br />
May 15 18:52:02 <SamBC> Then anyone who wants to can blog about it, on their own blogs, and I'll certainly present other people's ideas as guest posts on the blog (linked in the topic)<br />
May 15 18:52:40 <SamBC> And then I'll have a crazy busy week next week, so won't be doing that much, but will try to sort out a better way to have these discussions :)<br />
May 15 18:52:49 <SamBC> <techiecarer> I think getting the domain name (even if it's temporary due to name change), as well as setting up a forum on there, is probably the next step after that<br />
May 15 18:53:02 <SamBC> iNgobe> If a untited group is not formed within a week or two and is not ready to speak with one voice for disabled, carers, anybody affected by disability rights, there won't be much point in having formed a pointless political party with a constituion and votes. Votes for what?<br />
May 15 18:54:11 <SamBC> <eskimogremlin> i think gettin a forum is whats need keep ideas flowing<br />
May 15 18:54:17 <SamBC> <DavidGillon> I think what's needed is a forum of some description, could be any of the forum platforms from yahoogroups to yuku (sp?), just give us somewhere to talk at times to suit our own needs<br />
May 15 18:54:48 <SamBC> I would suggest a platform that can be accessed over the web and by email. Email is generally more accessible than web for VI users.<br />
May 15 18:54:59 <SamBC> <iNgobe> Gathering members and uniting the divided factions of disability groups still seems more urgent than anything else<br />
May 15 18:55:10 <SamBC> GoogleGroups might work, for instance.<br />
May 15 18:55:35 <SamBC> Get some discussions and momentum going, but we can't wait for a consensus before we actually set up the organisation - because it will never, ever happen.<br />
May 15 18:55:42 <SamBC> <DavidGillon> iNgobe - I really don't think we're going to get a united group, disability politics is too fractured, but if we get everyone pointed in roughly the same direction, it's a step forward (herding cats springs to mind)<br />
May 15 18:56:38 <SamBC> Heh. I do a lot of stuff with Quakers, and the only reason we manage to get unity on things is that we have special processes based on a certain amount of faith.<br />
May 15 18:56:49 <SamBC> <iNgobe> I'm sure we can.<br />
May 15 18:56:58 <SamBC> <iNgobe> I was all ready to set out in search of all the cats when I saw the post about this group!<br />
May 15 18:58:12 <SamBC> So, in the next few days some of us will set up better communication channels, I'll keep updating the blog, and am happy to share guest posts (even if they fundamentally disagree with me)<br />
May 15 18:58:21 <SamBC> <eskimogremlin> i think agreeing on a group forum is vital sam could right and ask for opinion or set one up and always change it later on<br />
May 15 18:58:49 <SamBC> I'm going to test some waters with different impairment groups to try and find a lowest common denominator type of forum that works okay for everyone.<br />
May 15 18:58:57 <SamBC> <iNgobe> I have my own 'neglected group of the most disabled' for whom I started campaigning, but once I joined multiple groups so as to have more impact, I discovered how small each leadership group is and how embattled<br />
May 15 18:59:04 <SamBC> And we'll get something set up.<br />
May 15 18:59:12 <SamBC> <Spoonydoc> iNgobe you talked about disability groups who were run down and exhausted. did you have specific ones in mind? are they ones you are in touch with?<br />
May 15 18:59:38 <SamBC> I think this is naturally winding down now into a space where people might be better chatting without structure, so I'm going to draw a line now.<br />
May 15 19:00:02 <SamBC> I'll sum up a little, then post anything people have said in the last minute or two that I haven't already relayed, then I'll disabled moderation.<br />
May 15 19:00:39 <SamBC> There are lots of questions that have to be answered, and there's no consensus even in this small group as to the answers, but some bits of direction seem clear. I'll write up notes trying to capture that.<br />
May 15 19:00:47 <SamBC> I'll also post the transcript of this ASAP.<br />
May 15 19:01:13 <SamBC> Then I'll work with some other people (just to spread the technical work) on getting better channels of communication up over the next few days.<br />
May 15 19:01:42 <SamBC> I'll post my thoughts to the blog as ever, and if anyone wants me to guest post something, let me know on Twitter (@narco_sam) or something.<br />
May 15 19:01:57 <SamBC> (guest post something by them on the blog I run, that is)<br />
May 15 19:02:14 <SamBC> Then, we'll see what happens for a bit, but I'll keep driving forward to make sure something does :)<br />
May 15 19:02:28 <SamBC> Thank you all for coming and sharing your thoughts. It's been great.<br />
May 15 19:02:33 <SamBC> And the last comments I hadn't copied:<br />
May 15 19:02:40 <SamBC> <iNgobe> A Facebook forum and page would be very good anyway, simply to encourage members to join, to aid public impact etc as well as to chat for the moment<br />
May 15 19:02:53 <SamBC> <DavidGillon> WRT VI users - maybe ask some if they have a preferred comms platform - I've got at least a couple in my twiter followers if nothing else<br />
May 15 19:03:00 <SamBC> <iNgobe> Thanks ve much for doing this<br />
Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-83460747157790984042015-05-14T22:07:00.000+01:002015-05-14T22:48:45.700+01:00Transcript of Live Chat 1<i>This is a full transcript of the moderated chat of Thursday May 14th. It has not yet been cleaned up for readability - this is exactly as it appeared to people in chat. I plan to clean it up to make it more readable later.</i><br />
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May 14 20:06:34 <SamBC-Host> Firstly, how moderation works.<br />
May 14 20:06:46 * spoons4all (586d5d35@gateway/web/freenode/ip.88.109.93.53) has joined<br />
May 14 20:07:13 <SamBC-Host> Any of you can type a message at any time. However, only people with 'operator' privileges will see it. If you're on the web client (and a lot of other IRC client), that means people with an '@' in front of their name.<br />
May 14 20:08:04 <SamBC-Host> Anyone with 'voice' (a '+' in front of their name) can send messages everyone can see (or so I sincerely hope, otherwise no-one is seeing this)<br />
May 14 20:08:10 * naomi (56182804@gateway/web/freenode/ip.86.24.40.4) has joined<br />
May 14 20:08:10 <SamBC-Host> As can operators.<br />
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May 14 20:08:32 <iammrj> DavidGillonb: that worked.<br />
May 14 20:08:52 <SamBC-Host> So, if you have a point to make, a question to ask, or an answer to anyone else's question, just type it in as normal.<br />
May 14 20:09:22 <SamBC-Host> iammrj has kindly agreed to moderate. This is not to censor what anyone is saying, just to make sure things don't go too quickly, and to keep things in order.<br />
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May 14 20:09:53 <SamBC-Host> We will be publishing a transcript of this chat - the moderated version will go up as soon as possible, and the unmoderated bit will as soon as we've gone through to make sure there's nothing sensitive in it.<br />
May 14 20:10:32 <SamBC-Host> What iammrj will do is to copy and paste people's contributions into the chat. If more than one person is making the same point, he may note that as well.<br />
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May 14 20:10:55 <SamBC-Host> On the web client, the place to type stuff in is right at the bottom of the window/tab/whatever<br />
May 14 20:11:12 * marand (56ba2c07@gateway/web/freenode/ip.86.186.44.7) has joined<br />
May 14 20:11:30 <SamBC-Host> If it seems like we need a bit more of a quick back-and-forth, one or more of you may be given 'voice' temporarily to do that.<br />
May 14 20:11:41 <SamBC-Host> If this doesn't seem to be working at any point, we'll try it without moderation.<br />
May 14 20:12:06 <SamBC-Host> So, with apologies to people who came in a bit later and missed some or all of that explanation, does anyone have any practical questions about this?<br />
May 14 20:12:39 * NaomiJacobs123 (56182804@gateway/web/freenode/ip.86.24.40.4) has joined<br />
May 14 20:12:52 <SamBC-Host> (I'll just give it a minute to see if there are other questions about the practicalities here, and then start sharing questions people have already posted)<br />
May 14 20:13:18 <SamBC-Host> Hi NaomiJacobs123, marand, and others.<br />
May 14 20:13:40 * SamBC has changed the topic to: Live chat on setting up a union of disabled people STARTED | Channel currently MODERATED<br />
May 14 20:14:06 <SamBC-Host> So, read along, say any questions you have, and iammrj or I will copy them into chat at a reasonable pace<br />
May 14 20:14:52 <SamBC-Host> Good first question here, though I'm not sure I have an answer... <hossylass> OK, just to start, does anyone know how many grass roots organisations there are?<br />
May 14 20:15:43 <SamBC-Host> Someone please post an correct me, but I'm not sure there's a definite answer to that - I'm sure several of us could list fairly high-profile national ones (BT, PP, DPAC), but there are local things and conditions specific things much older.<br />
May 14 20:16:19 <SamBC-Host> <LettyAndImogen> Too many to list!<br />
May 14 20:16:24 <SamBC-Host> <latentexistence> does anyone even have a directory of such organisations?<br />
May 14 20:16:43 <iammrj> <lonaitebiscuit> there is also sisters of freida (spelling)<br />
May 14 20:17:20 <SamBC-Host> <DavidGillonb> And there's also Disability Rights UK, who ISTR the gov giving a mandate to be a voice for us (Yeah, colour me impressed, not)<br />
May 14 20:17:27 <iammrj> Maybe one of the things we'll have to look at is having someone who can act as a point of contact for these orgs?<br />
May 14 20:17:55 <SamBC-Host> That's a good point about DRUK - I've heard a lot of discomfort about them being treated as the go-to group for disabled people's concerns, for government and for others.<br />
May 14 20:18:41 <SamBC-Host> Personally, I'm not sure we should worry too much quite yet about existing organisations, unless there's a wonderful one we've somehow not heard of that is already trying to do what we're talking about.<br />
May 14 20:18:59 <SamBC-Host> <hossylass> So maybe that could be oneof our first tasks - inviting in groups who can give a little mission statement, and create a directory for people to use?<br />
May 14 20:19:51 * ukwatching (5c0480fc@gateway/web/freenode/ip.92.4.128.252) has joined<br />
May 14 20:20:15 <SamBC-Host> This is just my view, but it seems to me that we want to do something that hasn't been done, at least not successfully. We want an organisation that speaks for disabled people, but actually has some degree of mandate to do so - because it is driven by as many disabled people as possible.<br />
May 14 20:20:27 <iammrj> NaomiJacobs123: we are aware. There will be blog posts of the transcrips where people can ask questions and get responses too. this was simply the fastest and easiest way to get the ball rolling but there'll be other ways people can contribute with equal weight<br />
May 14 20:20:32 <SamBC-Host> Not just that, but a space where disabled people can talk about all sort of questions.<br />
May 14 20:21:05 <SamBC-Host> <LettyAndImogen> Office for Disability Issues - supposedly a government org<br />
May 14 20:21:47 <SamBC-Host> ODI are a sort of multi-department office that works across government departments (like the Cabinet Officer, DWP, BIS, etc) to promote whatever agenda the government tell them to.<br />
May 14 20:22:10 <iammrj> ukwatching: not right now, but there'll be transcripts posted online later<br />
May 14 20:22:31 <iammrj> <amy_> https://www.gov.uk/government/publications/disabled-peoples-user-led-organisations-list-and-contacts list here might be useful?<br />
May 14 20:22:31 <SamBC-Host> <spoons4all> in the past i thought of something like a disabled people led parliamentary forum should exist.<br />
May 14 20:22:57 <SamBC-Host> spoons4all: do you mean actually in Parliament, or just a parliament-like thing for disabled people?<br />
May 14 20:23:37 <iammrj> <LettyAndImogen> I'd really like to know how you see this being structured? [all of what? our new group?]<br />
May 14 20:23:56 <SamBC-Host> Okay, I'll take a bash at LettyAndImogen 's<br />
May 14 20:23:59 <SamBC-Host> question<br />
May 14 20:24:20 <SamBC-Host> This is just what I'm imagining - it doesn't have to be done like this, but it can start people talking and thinking.<br />
May 14 20:25:02 <SamBC-Host> I think we need a membership-based group, like a club or society - or a trade union. We'd have a constitution and governance structures.<br />
May 14 20:25:26 <SamBC-Host> Votes of the whole membership would be the main driving force, but with an executive committee to oversee things and actually make sure what members want gets done.<br />
May 14 20:25:33 <iammrj> NaomiJacobs123: nobody can see what the other people are saying except from me and Sam, so we copy and paste what people are saying for everyone to see to stop us all getting 'information overload' and to keep everything running smoothly. if there's a double name, the person who asked the question is second.<br />
May 14 20:26:04 <SamBC-Host> Maybe with extra committees set up to do specific work as and when needed, like doing some research, or drafting a response to a consultation.<br />
May 14 20:26:37 <SamBC-Host> The big difference between other membership orgs and what we need is that we have to include people who can't make in-person meetings, which there are several ways to do.<br />
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May 14 20:27:48 <SamBC-Host> Getting back to spoons4all's point:<br />
May 14 20:27:49 <SamBC-Host> <spoons4all> both. wld hav to hav local option 4 people 2 ill 2 travel 2 b able 2 take part<br />
May 14 20:29:11 <SamBC-Host> So, spoons4all has suggested some sort of "disabled people led parliamentary forum". I think some of that would be served by a national members organisation. If we can include people who can't make it to meetings, especially.<br />
May 14 20:29:25 <SamBC-Host> And I'd hope to see local groups, either new ones or existing ones, being part of this.<br />
May 14 20:29:35 <SamBC-Host> <LettyAndImogen> Regional groups?<br />
May 14 20:30:00 <SamBC-Host> Yes, that sort of thing. But I don't think we can expect to have a local or regional group for every area straight away.<br />
May 14 20:30:13 <iammrj> <amy_> would you have associatie members e.g. non disabled people, organisations?<br />
May 14 20:30:22 <SamBC-Host> amy_: yes, I would personally hope so.<br />
May 14 20:30:43 <SamBC-Host> I think this needs to be led by individual disabled people, but that doesn't mean keeping non-disabled people out<br />
May 14 20:31:02 <SamBC-Host> And I would hope that organisations could choose to support us in some official way that we could recognise.<br />
May 14 20:31:48 <SamBC-Host> <amy_> an online way of having conferences, AGMS etc would make big difference to those who can't usually take part in the types of things<br />
May 14 20:31:59 <iammrj> (Es_: it depends what software you're using I'm afraid. I'm not sure if it can be done on the web client if that's what you're using)<br />
May 14 20:32:03 <SamBC-Host> Absolutely!<br />
May 14 20:32:47 <SamBC-Host> (Quick note on accessibility of this chat - we know there's a lot of downsides to it. This was the best fit for something that works and can be done quickly.)<br />
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May 14 20:32:52 <iammrj> Es_: keep an eye out for the blog posts with the transcripts! Shouldn't be too long after we're finished<br />
May 14 20:33:29 <iammrj> <DavidGillonb> The other point WRT DPAC is we need to understand how we're intending to be different from them,<br />
May 14 20:33:30 <SamBC-Host> So, I think we would want to have in-person meetings, as big as the membership implies. But we have to include people who can't come to them at the forefront of things.<br />
May 14 20:34:19 <SamBC-Host> DavidGillonb: I hesitate to explain how I think we should be different to any one group particularly, but for that one there's one easy point. Personally, I don't think this new organisation should be all about cuts.<br />
May 14 20:34:26 <SamBC-Host> Or even all about politics and government.<br />
May 14 20:34:54 <SamBC-Host> I want to see disabled people unite to deal with all the issues we face, and austerity and ideologically-driven cuts are part of that, but not all of it.<br />
May 14 20:35:18 <SamBC-Host> <ukwatching> I cant make in person meetings at all, disabled and fulltime carer, I would think that theres already groups in many areas for those who can go to meetings<br />
May 14 20:35:43 <SamBC-Host> So, here's the two main steps I would want to see to make meetings accessible to those who can't make it, for whatever reason.<br />
May 14 20:36:02 <iammrj> <amy_> a web platform with membership levels & document access as required plus a way of working jointly on documents, in addition to discussion forums,webinar/chat type platform<br />
May 14 20:36:07 <iammrj> <marand> just a thought but how is this going to be funded to enable it to operate on a day to day basis with regard to it's operation and resources.<br />
May 14 20:36:10 <SamBC-Host> The first is to ensure they can vote - by making sure all motions, candidates for election and everything are publicised well in advance, to enable people to vote online or by post or whatever.<br />
May 14 20:36:45 <SamBC-Host> The second is to allow them to participate in real-time. That potentially gets expensive, depending on numbers, but I would say we could do it - using telepresence.<br />
May 14 20:36:59 <SamBC-Host> That's a fancy word meaning, essentially "being there when you aren't physically there".<br />
May 14 20:37:24 <SamBC-Host> I'd hope to stream the meetings live, and have someone, maybe several, at a computer, acting as a proxy for people who aren't there.<br />
May 14 20:37:41 <SamBC-Host> And yes, amy_, I'd definitely want a platform like that for use between meetings as well.<br />
May 14 20:37:55 <SamBC-Host> marand asks about funding. That's a very important practical point.<br />
May 14 20:38:08 <SamBC-Host> Doing anything worth doing here is going to cost money, there's no way to argue with that.<br />
May 14 20:39:09 <SamBC-Host> So, I think we would have to ask members to contribute financially - but we obviously can't ask for much. We can also look for fundraising opportunities, and try and get funding from other organisations.<br />
May 14 20:39:53 <SamBC-Host> There are two grant-making trusts I'm aware of, and I'm sure one or the other of them would consider helping us with seed funding - Joseph Rowntree Charitable Trust, and Joseph Rowntree Reform Trust. The first does things that would be considered 'charitable', the other does other things :)<br />
May 14 20:40:05 <SamBC-Host> <ukwatching> a small group can do stuff volunrteer only - but it takes a lot of commitment, and finding free platforms<br />
May 14 20:40:18 <SamBC-Host> Yep. And we don't want to burn out our volunteers.<br />
May 14 20:40:47 <iammrj> <spoons4all> i wld pay small amount. 38 degrees hav been enormously successful using micro payments to fund lawyers etc...<br />
May 14 20:40:50 <iammrj> <lonaitebiscuit> there's also the Lottery Fund, which will fund community building organisations<br />
May 14 20:40:59 * SamBC-Host chuckles<br />
May 14 20:41:04 <SamBC-Host> I always forget lottery funding!<br />
May 14 20:41:41 <SamBC-Host> Most of the stuff I volunteer for and help run is Quaker organisations, who won't usually take lottery funding as a matter of principle. Even if I were on the executive of this new organisation, I wouldn't insist it stick to *my* principles.<br />
May 14 20:41:47 * HoloIRCUser3 (~holoirc@host86-156-223-106.range86-156.btcentralplus.com) has joined<br />
May 14 20:41:49 <iammrj> <amy_> some trade unions have membership fees based on income with out of work or low income paying £1-£2 month<br />
May 14 20:42:02 <iammrj> <eskimogremlin> I think its going to have to be worked out into what we can do now with no funding to where we would like it to be<br />
May 14 20:42:08 * HoloIRCUser3 is now known as bendyboliver<br />
May 14 20:42:21 <SamBC-Host> What we can do with no funding is mostly what we're doing now, though we could organise it better.<br />
May 14 20:42:31 * latentexistence_ (~latentexi@host86-130-52-47.range86-130.btcentralplus.com) has joined<br />
May 14 20:42:31 <SamBC-Host> We write, and we post blogs, and we get things going on social media.<br />
May 14 20:42:38 <iammrj> <DavidGillonb> IIRC People First England were sponsored by a couple of related charities to get them off the ground, Kaliya would be able to tell you the details<br />
May 14 20:42:41 <iammrj> <ukwatching> most charities have had funding cuts, funing will be harder than ever<br />
May 14 20:43:03 <SamBC-Host> JRCT and JRRT are still making grants, I know that much. I'm sure there are others. And we don't need much to get started.<br />
May 14 20:43:11 <iammrj> <LettyAndImogen> I suppose it comes down to what our priorities are, what money would be spent on first etc<br />
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May 14 20:43:44 <iammrj> <amy_> I imagine a grand plan plus a plan of how to get there. how much time do you take putting into place governance etc before doing anything?<br />
May 14 20:44:01 <iammrj> <bendyboliver> At the moment I would be happy to pay a small monthly membership fee, but obviously some people might not be able to.<br />
May 14 20:44:10 <SamBC-Host> amy_ and LettyAndImogen, I think your points are related.<br />
May 14 20:44:22 <SamBC-Host> We need to know our first steps, and our later goals. Neither will be decided today.<br />
May 14 20:44:45 <iammrj> <DavidGillonb> I think the initial priority would need to be some sort of online forum (or using an existing one) to give us somewhere as a focus for discussion<br />
May 14 20:44:47 <SamBC-Host> I dream of an organisation with hundred of members, all engaged in making our first decisions. And some decisions have to wait until the organisation is formally started.<br />
May 14 20:45:04 <SamBC-Host> But how do we get there, and how do we decide the details? That's a harder question.<br />
May 14 20:45:28 <iammrj> <LettyAndImogen> Online forum is a must, the sooner the better, and that's free<br />
May 14 20:45:34 <SamBC-Host> DavidGillonb: I know some other people have set up a forum to discuss ideas. But I'm going to say something that people might find a little shocking.<br />
May 14 20:46:10 <SamBC-Host> If we try to sort out every little detail with everyone who's interested putting in their two penn'orth on each detail, we'll never get anywhere. Well, we'll get somewhere eventually, but it will be messy.<br />
May 14 20:46:23 <iammrj> <Pip> We need to research how much it would cost to set up a website with chat capabilities. I would be happy to contribute to that, and help to run it.<br />
May 14 20:46:25 <SamBC-Host> I've seen groups fall in to that morass.<br />
May 14 20:47:05 <SamBC-Host> <LettyAndImogen> No I do agree, one of the main reason DAN can't stand today is because they refuse to have any kind of leadership team<br />
May 14 20:47:05 <iammrj> <bendyboliver> Forum would be excellent for organisation, and the leadership could use it to discuss aims and details with a lot of people. Build it from the ground up as it were.<br />
May 14 20:47:26 <iammrj> <amy_> get outline idea, smallish group to flesh it out then poll/ask for opinion?<br />
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May 14 20:47:37 <SamBC-Host> amy_: That's possible.<br />
May 14 20:47:59 * Jan777 (5685c579@gateway/web/freenode/ip.86.133.197.121) has joined<br />
May 14 20:48:04 <iammrj> <DavidGillonb> I don't think my earlier note about DPAC's start got through, governance and a formal organisation came later, they actually started up completely informally, just three pro-tem founders/leaders urging people to action<br />
May 14 20:48:07 <SamBC-Host> I mean, I could write a constitution today (well, this week) and get people to sign up and all, but sorting out all the necessary practicilities is too much for one person!<br />
May 14 20:48:07 <iammrj> <LettyAndImogen> I know its frustrating having people on some kind of leadership, but if this is truly user led then that shouldn't be a terrible problem<br />
May 14 20:48:50 <SamBC-Host> I would like to see a constitution written, a decent starting core of members sign up, have the constitution ratified and the first executive elected, as quickly as possible.<br />
May 14 20:49:10 <iammrj> <lonaitebiscuit> well I agree with the point of getting a few people to hash out the main premises and go from there, because the truth is most people are going to hang out in the background and not make a move till something is concrete<br />
May 14 20:49:12 <SamBC-Host> Because I think democracy should be the foundation of the organisation more than personalities or plans.<br />
May 14 20:49:21 <iammrj> <spoons4all> sounds like we need some guiding principles 2 distinguish disability union from existing groups like dpac. v similar to writing policy<br />
May 14 20:49:28 <iammrj> <amy_> as long as way of passing information up and down chain & both sides listening, leadership team can work<br />
May 14 20:49:33 <iammrj> <LettyAndImogen> We need to strike while we're all in the room and on the same page, leave it a month and this could all be up in smoke<br />
May 14 20:49:38 <SamBC-Host> spoons4all: funny you should suggest that... I've been writing down some thoughts.<br />
May 14 20:50:15 <iammrj> a temporary leadership to start it up should work, because as soon as more members are involved and voting systems are in place, there could a vote for a more permanant team<br />
May 14 20:50:16 <SamBC-Host> After this chat, I'll post my rough ideas, and people can comment on them, and anyone who's here tomorrow (which may include some not here today) can talk about them then as well.<br />
May 14 20:50:43 <iammrj> <bendyboliver> I think passing information up the chain is key, every one should feel that their concerns are legitimate<br />
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May 14 20:51:14 <SamBC-Host> So, I have a list I wrote mostly on my own of 13 principles. I don't expect everyone to agree with them.<br />
May 14 20:51:49 <SamBC-Host> (The numbering is a bit arbitrary, there's a few where 2-3 consecutive ones are the same principle, but I broke it up to be readable)<br />
May 14 20:52:22 <iammrj> <ukwatching> agree strongly with bendy communication and information sharing vital along with inclusiveness<br />
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May 14 20:53:00 <SamBC-Host> Yeah, I think the organisation has to be led by the membership, more than just the members electing the executive.<br />
May 14 20:53:25 <SamBC-Host> I think votes of the membership should set policies, create projects, tell the executive what they should be trying to achieve.<br />
May 14 20:53:30 <iammrj> <LettyAndImogen> being how important coms is, i'd hope we can move away from this portal asap!<br />
May 14 20:53:31 <iammrj> <amy_> there must be a way the membership can raise an issue for consideration/discussion<br />
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May 14 20:54:02 <SamBC-Host> amy_: Absolutely. I think even if organisation is based around accessible versions of traditional meetings, there has to be a forum for discussion between them.<br />
May 14 20:54:16 <SamBC-Host> I'll just take a minute and post my principles on the blog now. Be right back.<br />
May 14 20:55:57 <iammrj> lonaitebiscuit: you'll be able to ask questions and leave comments/discuss etc on the transcripts too. the whole point of them is for people for whom this format is inaccessible<br />
May 14 20:56:28 <SamBC-Host> So, my rough principles are up at http://unionofdisabledpeople.blogspot.co.uk/2015/05/my-thoughts-principles-for-union-of.html<br />
May 14 20:56:39 <SamBC-Host> (2 minutes, not bad)<br />
May 14 20:56:44 <iammrj> <Pip> What would we be called?<br />
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May 14 20:57:24 <SamBC-Host> Pip: good question. I first started talking about this online as a "union of disabled people", and that works as a name. Then some people didn't like the fact it sounds like a trade union, and others did particularly like that.<br />
May 14 20:57:44 <iammrj> <Pip> I mean, even if the name were to change later on, I could get us a domain name registered and set us up a small website to natter on.<br />
May 14 20:57:57 <SamBC-Host> I don't mind what it's called as long as it's simple and descriptive.<br />
May 14 20:58:24 <SamBC-Host> Disabled People's Association, Union of Disabled People, Disabled People's Circle, the options are endless.<br />
May 14 20:58:38 <SamBC-Host> But Union of Disabled People has a nice ring to it, and it's what I've used in a few places for now.<br />
May 14 20:59:01 <SamBC-Host> <amy_> only comment on blog so far is maybe include social model?<br />
May 14 20:59:24 <SamBC-Host> amy_: That's a very good point, and something I'll definitely write about in some commentary on the blog to explain the principles.<br />
May 14 20:59:46 <SamBC-Host> I made a conscious decision not to mention the social model. I, personally, subscribe to it, but a lot of disabled people are uncomfortable with it.<br />
May 14 20:59:52 <iammrj> <DavidGillonb> One worry WRT UDP - bit too like DUP etc for comfort!<br />
May 14 21:00:20 <SamBC-Host> That might be because they don't understand it, or because they've seen it misused, or because they have a legitimate theoretical issue with it.<br />
May 14 21:00:46 <SamBC-Host> The important point to me, though, is that the social model is a sociological model, and models are never perfect (by definition). I think what's important is to be practical.<br />
May 14 21:00:48 <iammrj> <spoons4all> 13 principles are good. i wld explicitly include ppl with learning difficulties as they get some of the same problems with employment and/ or inclusion<br />
May 14 21:01:38 <iammrj> <amy_> maybe need easy read principles too?<br />
May 14 21:01:40 <SamBC-Host> So the principles I wrote include some essential elements of the social model, like the fact that society is built for 'normal' people, not for us, and it should be built in a way that includes us.<br />
May 14 21:02:20 <iammrj> <spoons4all> some ppl who support social model dont like ppl with physical illness being considered disabled. is something i find hard 2 comprehend so 4 this reason agree with sambcHost<br />
May 14 21:02:21 <SamBC-Host> amy_: Almost anything I write could do with easy-read versions! I've an unfortunate habit of writing in ways that aren't great for people with poor literacy, LDs, etc.<br />
May 14 21:02:50 <SamBC-Host> Though I can be more accessible when I stop and think about it.<br />
May 14 21:03:19 <iammrj> <DavidGillonb> WRT definition of disability, I'd go with the one from the Equality Act as it's the most inclusive I've seen<br />
May 14 21:03:24 <SamBC-Host> But I want this union (or whatever) to be somewhere all disabled people can be included, social model purists and social model sceptics.<br />
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May 14 21:03:45 <iammrj> <LettyAndImogen> Letty is a writer, she'd be more than happy to help with that side of things Sam<br />
May 14 21:03:45 <SamBC-Host> DavidGillonb: I had half a mind on the Equality Act definition as well, tried to incorporate the gist of it without being as technical.<br />
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May 14 21:03:59 <SamBC-Host> Thank you, Letty.<br />
May 14 21:05:05 <SamBC-Host> The other principle I'm very sure of is number 11. That our aim is to improve the lives of disabled people, without preconception of how we do that.<br />
May 14 21:05:43 <SamBC-Host> Maybe sometimes we'll lobby government, sometimes we'll 'advise' parties, sometimes we'll raise awareness, sometimes we'll lobby business, and sometimes we'll just use our resources to help disabled people.<br />
May 14 21:05:59 <iammrj> bendyboliver> I think as well if we are a positive caring organisation it might help people who are<br />
May 14 21:06:15 <iammrj> <bendyboliver> Frightened to call themselves disabled, I know a few people like this because they feel disability is very negative.<br />
May 14 21:07:03 <SamBC-Host> A friend of mine once showed me a piece of writing from Cambridge (I think) students' union's Disability Campaign, about disability as a positive identity. It was based on the social model, but the point could be made without it.<br />
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May 14 21:07:28 <SamBC-Host> Saying "I am disabled" is saying "society gets in my way"; it's not all there is to it, but it's part of it.<br />
May 14 21:08:03 <SamBC-Host> <spoons4all> i personally believe wca is so harmful it torpodoes almost all attempts to improve dis ppl's lives because it encourages scrounger rhetoric 1st and foremost. i hav good reason to suspect politicians see dis ppl only in terms of 9-5 employment<br />
May 14 21:08:31 <iammrj> <DavidGillonb> Actually I think one major area we could exert influence is PR, putting the disability view point out there, even if just in the broadsheet letter columns<br />
May 14 21:08:41 <SamBC-Host> I couldn't agree with you more, spoons4all. I just don't think that's all we should work on. I don't want to replace or subsume DPAC and Black Triangle.<br />
May 14 21:09:10 <SamBC-Host> DavidGillonb: You're absolutely right. Rather than duplicate the work of other organisations, we can support them, while doing things that aim for the same goal in different ways.<br />
May 14 21:09:45 <iammrj> <ukwatching> I think we should openly support dpac, black triangle<br />
May 14 21:10:15 <iammrj> <LettyAndImogen> The word on the street is that DPAC want to make our lives difficult, and that we are 'left overs' from Spartacus<br />
May 14 21:10:19 <iammrj> <LettyAndImogen> People are anxious that Sue is involved<br />
May 14 21:10:28 <SamBC-Host> LettyAndImogen are getting a link to the "disability as a positive identity" piece I mentioned. It's a small world, keep meeting people who know some of the other people.<br />
May 14 21:11:02 <iammrj> I don't think she IS involved, but people think she is?<br />
May 14 21:11:04 <SamBC-Host> Sue is not involved. Though I wouldn't want anyone to be blacklisted.<br />
May 14 21:11:24 <SamBC-Host> Sue RTed/shared a couple of things I posted. That's all the involvement she's had.<br />
May 14 21:11:38 <SamBC-Host> I can say that with absolute clarity<br />
May 14 21:11:57 <iammrj> <DavidGillonb> And I can't be a left-over from Spartacus as I was never in Spartacus! > likewise ;)<br />
May 14 21:12:32 <SamBC-Host> I was involved in several bits of 'spartacus' work (and how I have always been frustrated by the accidental acquisition of that sobriquet)<br />
May 14 21:12:48 <iammrj> http://www.disabled.cusu.cam.ac.uk/campaigns/selfdefine/<br />
May 14 21:13:01 <iammrj> <amy_> if we have exec committee can publish names ?<br />
May 14 21:13:05 <SamBC-Host> If anyone thinks that means I can't be trusted, I'm happy to have some one-to-one conversations to reassure people.<br />
May 14 21:13:32 <SamBC-Host> amy_: I would expect it would be pretty much necessary, unless all the materials used to run the election of them is kept secret.<br />
May 14 21:13:57 <iammrj> <LettyAndImogen> Perhaps we would need to consider conflict of interest in respect to GM links, should Sue wish to be more activly involved.<br />
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May 14 21:14:25 <SamBC-Host> I would worry about conflicts of interest for executive members - but given the current situations, if Sue did stand, I doubt she'd be elected.<br />
May 14 21:14:59 <SamBC-Host> I want to be clear about one thing though - the sorts of attacks that have been made on Sue are something I would rather not see.<br />
May 14 21:15:08 <iammrj> <amy_> I was thinking that yes essential, but would reassure members/prospective members who's actually leading and the rules on elections,listening to members etc<br />
May 14 21:15:31 <SamBC-Host> We, disabled people, have different ideas, and different opinions about how to achieve our goals. Even different ideas about those goals.<br />
May 14 21:16:02 <SamBC-Host> Some people want all disabled people to be able to work, and feel that it's possible to change the economy and employers to achieve that (I forget the campaigner's name, but there's one I'm thinking of there).<br />
May 14 21:16:18 <iammrj> <bendyboliver> I think if exec names are published then they'd need tips on online personal safety. Even simple things like Facebook privacy settings.<br />
May 14 21:16:21 <iammrj> <amy_> members need to feel they have a voice, a democratic way of putting idea forward, and way of deciding of its acted upon?<br />
May 14 21:16:51 <SamBC-Host> Some think that being part of society is much more than that, and survival is even more important, so we need strong and generous safety nets that acknowledge some us can't work, especially with how our economy is structured now.<br />
May 14 21:17:21 <SamBC-Host> If we want to truly be a union, be united as disabled people, all those opinions need to have a place in the organisation, even if some of them don't end up influencing policy.<br />
May 14 21:17:39 <iammrj> <LettyAndImogen> I think the biggest problem is that people view Sue to have 'changed sides'<br />
May 14 21:18:09 <iammrj> <spoons4all> one rule wld hav 2 b that personal attacks are always unacceptable within group. attack the argument not the person. obvious but needs 2 b said<br />
May 14 21:18:11 <SamBC-Host> bendyboliver: Absolutely. Anyone, before standing, should get a briefing on tightening up their social media security etc.<br />
May 14 21:18:18 <SamBC-Host> amy_: Yes!<br />
May 14 21:18:34 <SamBC-Host> Anyone should be able to propose a policy motion or a new campaign, and it be voted on by all members.<br />
May 14 21:18:52 <SamBC-Host> spoons4all: Absolutely, I couldn't agree more.<br />
May 14 21:20:26 <iammrj> <DavidGillonb> We saw the danger with the pure democratic model with 38 Degrees, where disability was never popular enough for them to campaign over.<br />
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May 14 21:21:10 <SamBC-Host> That's a fair point. At least that specific problem with a democratic process won't happen if we are an organisation dedicated to disability.<br />
May 14 21:21:23 <iammrj> <DavidGillonb> Policy should be guided by members, but directed by exec, which has flexibility to identify needed areas of campaigning<br />
May 14 21:21:28 <iammrj> <amy_> but wed be centred around disability<br />
May 14 21:21:48 <SamBC-Host> We need to be sure to have ways that minority interests *within* disability don't get neglected.<br />
May 14 21:22:07 <iammrj> <eskimogremlin> personally we have give a voice to everyone otherwise whats the point? surely it is understood that even with all the access barriers removed some people will still be restricted by there disability by there health and just because that restriction would remain it would be better for them<br />
May 14 21:22:18 <SamBC-Host> Of course, if policy is decided as separate yes/no questions, it gets a bit better. Rather than saying "here's 10 things, we'll do the two that get the most votes", we'd adopt everything that a majority supported.<br />
May 14 21:23:12 <SamBC-Host> With limited resources (money, volunteer time), it's hard to do everything. But that can be separate decisions from "will we try to work on this area"<br />
May 14 21:23:36 <SamBC-Host> <spoons4all> cld we identify list of 3 major and 3 minor points not covered by dpac etc that we need 2 think about<br />
May 14 21:24:05 <SamBC-Host> I don't know that we want to pick issues now. But it helps to know what those issues could be. I don't want to have target numbers now, certainly.<br />
May 14 21:24:48 <iammrj> <DavidGillonb> Huge area not covered by DPAC - Access<br />
May 14 21:25:01 <iammrj> <amy_> could we consider having youth/BME/lgbt representatives for example?<br />
May 14 21:25:28 <SamBC-Host> But I'd say that if we're supporting, even where other organisations are working on them, issues like: social security, accessible transport, healthcare equality, access to education (DSAs, facilities, etc), access to employment, representation in government, poverty (not just cuts), media representation...<br />
May 14 21:25:56 <SamBC-Host> In principle, we'd do EVERYTHING, but where the best way to do that is to lend support to other organisations, then do that.<br />
May 14 21:26:27 <SamBC-Host> amy_: Concern for intersectionality is really important to me. Not sure the best way to do it, designated reps is one way. But we have to do it, to my mind.<br />
May 14 21:27:02 <SamBC-Host> <amy_> accessible housing<br />
May 14 21:27:05 <SamBC-Host> (also a good point)<br />
May 14 21:27:19 <SamBC-Host> <LettyAndImogen> Strength in numbers!!<br />
May 14 21:27:40 <iammrj> <DavidGillonb> WRT supporting other orgs, that may be the way to reassure DPAC - give them the lead on benefits<br />
May 14 21:28:09 <SamBC-Host> This is a really important point - I think the organisation needs to be accountable (hence democracy) and to be seen to be accountable. That would make the organisation more credible in the eyes of politicians, media, business etc.<br />
May 14 21:28:40 <iammrj> <LettyAndImogen> It's a huge frustration that even with so many orgs we are making little progress, we now have to pool together skills, resources and time. we defeat ourselves otherwise<br />
May 14 21:28:49 <SamBC-Host> DavidGillonb: another good point. I'd not suggest telling any org that we'll leave a topic well enough alone or blindly support them, but to recognise that they're dedicated to that, and we support them to keep working on it.<br />
May 14 21:29:05 <SamBC-Host> LettyAndImogen: that's another way this could work - as a clearing house between organisations.<br />
May 14 21:29:33 <iammrj> <Jan777> Offer active aliances<br />
May 14 21:29:38 <SamBC-Host> There's a separate idea, and it could be done by the same organisation or another one set up in parallel, to have a new/better umbrella group for all the campaigning orgs. Though they seem to be making moves in that direction as well<br />
May 14 21:29:39 <iammrj> <eskimogremlin> I think bringing access barriers down and being supportive of welfare can coexist and I think thats something that has been missing<br />
May 14 21:29:48 <SamBC-Host> eskimogremlin: Yes!<br />
May 14 21:30:22 <SamBC-Host> Okay, I think it's a good time to wrap up, or I'm going to have a cranky partner.<br />
May 14 21:31:05 <SamBC-Host> The published transcript will begin with where I started moderation, and end with when I disable it - so anything you say after moderation is turned off will be 'off the record' so to speak (though I can't promise no-one else will quote you.<br />
May 14 21:31:40 <SamBC-Host> We'll publish the moderated transcript ASAP and the unmoderated one later, and I'll write up some notes before tomorrow's chat so people coming in then can get an idea what we talked about.<br />
May 14 21:31:56 <SamBC-Host> Thank you all! Sorry about the limitations of this as a forum.<br />
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May 14 21:32:15 * bendyboliver has quit (Remote host closed the connection)<br />
May 14 21:32:16 * SamBC sets mode -m on ##disabledunion<br />
<br />Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-25440601607665356662015-05-14T20:55:00.005+01:002015-05-17T21:31:59.063+01:00My thoughts... Principles for a Union of Disabled People<div class="western">
<i>This is taken straight from my rough notes. ORGNAME is a stand in for whatever the organisation ends up being called.</i></div>
<div class="western">
<br /></div>
<div class="western">
<i>Commentary is interspersed among the principles, explaining what my intention was, and why I chose to put it the way I did.</i><br />
<br />
<i>These are just my ideas, and are completely up for discussion. Comments, as always, are welcome. </i> </div>
<div class="western">
<br />
<a name='more'></a><br /></div>
<div class="western">
The ORGNAME operates on the basis of the following
principles. While we do not expect members to agree them all as
generally true, they are to be accepted for the work of ORGNAME.</div>
<ol>
<li><div class="western" style="font-style: normal;">
The term
<i>disability</i> refers to the a person's life being harder due to
health condition, injury, impairment or difference in functioning.
This incorporates unavoidable practical difficulties, as well as
structural disadvantage due to society being constructed primarily
for people who whole, healthy, and 'normal'.</div>
</li>
<li><div class="western" style="font-style: normal;">
This understanding
of disability includes conditions that are mental as well as
physical, and all manifestations, including but not limited to
emotional, developmental, cognitive, sensory and physical
limitations or differences.</div>
</li>
<li><div class="western" style="font-style: normal;">
We know that some
people we refer to as 'disabled' prefer not to use this term. We
welcome these people to participate without insisting that they use
this term, on the understanding that they accept it will be the term
in general use within ORGNAME.<br />
<br />
<i>The first three principles are about understanding what we mean by 'disabled'. They deliberately stop short of adopting the social model, and that is quite deliberate. While I subscribe to the social model, I know many disabled people don't, for lots of reasons. Some don't understand it properly, others have experienced it being mis-stated or misused, even had people try to police disability with it and exclude them. Some have perfectly valid theoretical issues with it. The essential point, though, is that the social model is a <b>sociological</b></i><b> </b><i>model. Models are very helpful to understand phenomena, but by definition they are never perfect definitions of reality. What I've written is aimed at being inclusive and practical, while capturing some essential points of different approaches, including the social model's point that society disables us by virtue of being built with the needs of 'normal' people in mind.</i><br />
<br />
<i>The list of categories included is not meant to be exhaustive, but is supposed to include learning disabilities/difficulties as well, which isn't as obvious as it could be.</i><br />
</div>
</li>
<li><div class="western" style="font-style: normal;">
We seek to
represent the interests of disabled people regardless of other
characteristics, such as race, sex, gender, gender identity or
reassignment, sexuality, ethnicity, nationality and national origin,
and religion or other belief. We also understand that multiple
disadvantages tend to compound disadvantage, and seek to address the
specific difficulties faced by disabled people who have other
disadvantages.<br />
<br />
<i>This one is very simple - we try to understand and allow for intersectionality. It's also about inclusivity.</i></div>
</li>
<li><div class="western" style="font-style: normal;">
We strive to be a
mutually supportive environment for all disabled people; while our
members come first, we also aim to support and work in the best
interests of disabled people who are not members.<br />
<br />
<i>This one really has two parts - firstly, that we're mutually supportive, and secondly that we want to help all disabled people, not just members.</i></div>
</li>
<li><div class="western" style="font-style: normal;">
We do not expect
all members, let alone all disabled people, to agree on everything,
or to get on well with one another. We do expect members to treat
one another with respect, refrain from written, verbal or physical
attacks on one another, and respect our collective decision making.</div>
</li>
<li><div class="western" style="font-style: normal;">
We do not expect
members to publicly agree with and support all decisions and
policies of ORGNAME. We do expect such disagreement to be expressed
within accepted channels, as well as whatever other venues members
may choose. We also hope any such disagreement will remain polite
and avoid personal attacks.<br />
<br />
<i>Here's two that go together, again. The idea here is that the union be inclusive of people, even if they disagree with some of our acts or policies. I'd rather not see fractured organisations with different desires - though separate organisations can exist as well. I want the union to be a place we can all come together. That means not being dogmatic, and tolerating different opinions.</i></div>
</li>
<li><div class="western" style="font-style: normal;">
We do not engage
in party politics. We will criticise the mistakes and applaud the
successes of every political party and every politician on an equal
basis. Where we have policy recommendations, we will make them to
all relevant political parties.<br />
<br />
<i>I don't think we should just be Tory-bashing, or whoever might come after the Tories as the agents of oppression. I considered including other organisations as well, because even if an organisation is part of something we fundamentally disagree with, we can still tell them how to be less of a problem.</i><br />
<br />
<i>Basically, the idea is that we're not about political parties. Disabled people support a wide range of parties, some even support the Conservatives - we should be for all disabled people, not just those who we agree with politically.</i></div>
</li>
<li><div class="western" style="font-style: normal;">
We strive to
engage issues in a positive and constructive manner. When we are
telling a person or organisation what they are doing wrong, we
attempt to offer practical, workable suggestions to improve the
situation. We will also tell people what we would like to see in an
ideal world, but we accept that this is not an ideal world for
anyone, so we refrain from absolute positions.<br />
<br />
<i>This is sort of a personal thing of mine, but I truly believe it. It's much easier to get people to listen when you aren't just tearing things down. That applies to the people that you're criticising, but it's also true of a lot of 'neutral' observers.</i> </div>
</li>
<li><div class="western" style="font-style: normal;">
We believe that
honesty and openness can only enhance our campaigns, and will not
distort facts or evidence in an attempt to make a point.<br />
<br />
<i>Another personal thing, to be honest, but I think stating this as a principle does a lot to enhance credibility - you just have to follow it as well.</i><br />
<br />
<i>Politicians who play with our lives twist things to get their way, but we don't have to follow suit. </i> </div>
</li>
<li><div class="western" style="font-style: normal;">
Our aim at all
times is to achieve change to improve the lives of disabled people.
This may manifest, for example, through campaigning on issues,
through advocacy, working with the public, with politicians, with
third sector organisations or with businesses. Any other concern is
a means to that end.<br />
<br />
<i>I think this one is really important. The overriding goal of everything is to make life better for disabled people, and we need to keep that in mind at all times.</i><br />
<i> </i> </div>
</li>
<li><div class="western" style="font-style: normal;">
We believe that
all people deserve to be free from poverty, while taking no
collective position on income inequality beyond this. As an
organisation of disabled people in the United Kingdom, our concern
for poverty is focussed on such people.<br />
<br />
<i>I have a position on income inequality generally. Other people, including disabled people, have a different one. Some people have no opinion at all. But I hope that we can all agree that poverty is a bad thing and people shouldn't have to suffer it - and we're concerned with trying to address that for disabled people in the UK.</i><br />
<i> </i> </div>
</li>
<li><div class="western" style="font-style: normal;">
We believe that
work to improve the position of disabled people should be led by
disabled people. We appreciate the support of allies, and especially
of carers, with whom we share many concerns; it is, however,
important that disabled people's interests be represented by
disabled people, and that positions of leadership be mostly held by
disabled people.<br />
<br />
<i>Nothing about us, without us. Allies are important, but we're the ones who suffer discrimination, and this is our fight - we should lead it</i>. </div>
</li>
</ol>
Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-80436818619140895572015-05-14T17:06:00.003+01:002015-05-15T16:58:18.056+01:00Live Chat - web interfaceJust a note to let everyone know the web interface to the live chat can be reached at <a href="http://webchat.freenode.net/?channels=%23%23disabledunion&uio=Mj10cnVlJjM9ZmFsc2UmOT10cnVlJjE0PWZhbHNl25">http://webchat.freenode.net/?channels=%23%23disabledunion&uio=Mj10cnVlJjM9ZmFsc2UmOT10cnVlJjE0PWZhbHNl25</a><br />
<br />
This information has been added to previous posts as well.Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-10686547527868398732015-05-13T16:52:00.000+01:002015-05-13T16:52:06.864+01:00Why come to the live chat?So, I already posted about the <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/live-public-chat.html">live chats</a> I'm hosting. You might be wondering why you should come along. What will we be talking about, and how will it work? So, I thought it would be a good idea to give you a bit of an idea about this.<br />
<br />
There are lots of things that have to be decided before we can get a new organisation off the ground. There are lots of obstacles that we will need to overcome. I want to see a union that as many disabled people as possible will sign up to, and that we can all participate in even when we don't agree. Something that takes accounts of the range of impairments and illnesses that disabled people have, while still allowing everyone to take part. These aspirations mean a lot of things to overcome, in terms of practicalities and in terms of principles.<br />
<br />
I want the union to be effective at representing disabled people, and at securing positive change in the lives of disabled people. That means working out how things can be done effectively.<br />
<br />
I don't want the union to replace existing organisations or subsume them. That means identifying what's already done well, and working out how to support it without duplicating work.<br />
<br />
I also don't want to be controlling and dictatorial. That means working out how what I want fits in with what other people want, and integrating as much as possible of different hopes and dreams for the new organisation.<br />
<br />
I have a lot of ideas. This idea has turned into a dream for me, and it's occupying a lot of my thought, so I've developed those ideas a lot. But it's not just about my ideas, or my dream - this is for all of us. I don't want to share all my ideas and have them accepted by inertia, or be seen as a <i>fait accompli</i>, a done deal.<br />
<br />
So rather than post a load of my ideas as blog posts, or in a forum, I want to talk about my ideas, and all of your ideas and your thoughts, in a more interactive way. There's a lot of questions:<br />
<ul>
<li>What will be the essential principles of the union, and what will be its aims?</li>
<li>How will it make decisions?</li>
<li>What kind of things will it do, and how will it do them?</li>
<li>How will money be raised and spent?</li>
<li>How will meetings be run?</li>
<li>How will it relate to other organisations, existing and ones that may be set up in the future?</li>
<li>Should we even be doing this?</li>
</ul>
Doing this using a live chat means that we can all ask and answer questions. The live chat will be moderated, but just to make sure that it's easy to follow. Moderators will allow contributions without regard to their content (except if people are posting really abusive stuff), just to make sure that things come through at a manageable pace and we don't get 10 identical (or nearly identical) contributions in quick succession. If there's a question or comment that a lot of people are saying, the moderator will let everyone know that when they allow one of them through. A transcript of the unmoderated content will be produced, and will be shared (once we've been through it just to make sure there's no personal information or really nasty stuff). A transcript of the moderated chat will be shared much sooner, so everyone can see what was discussed, whether they were there or not.<br />
<br />
This isn't just going to be me telling everyone what I think we should do. This is the chance for everyone to share ideas. I <i>will</i> share my ideas, and the reasoning behind them, but I hope to be asking questions as much as I answer them.<br />
<br />
Of course, you can share your ideas without coming to the chat. I'm not the only person trying to work this out, and you can all share your ideas on your own social media, blogs, or whatever. Please do let me know about posts like that, and I'll try to re-share everyone's ideas as well. In the 2 weeks after the chats, I'll post here more about options and what we could do, based on what everyone contributes to the live chat. Then we'll probably have some more live chats, and hopefully we'll be nearer to getting something off the ground then.<br />
<br />
I hope to see as many of you as possible in the live chats.<br />
<br />
We can do this, together. Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-46698534413173354982015-05-13T15:49:00.002+01:002015-05-15T16:58:32.944+01:00Dates and Times for Live ChatThe chats will be at about 20:00 (8pm) on Thursday and 17:30 (5:30pm) on
Friday, and will run for up to 90 minutes. There is no separate agenda
for the two, it's just running at different times to get more people
involved. I know this is short notice, and there will be more
opportunities to share ideas later, I just wanted to get the ball
rolling quickly. They will be held in the channel ##disabledunion (note the two hashes, ##) on Freenode
- the web interface can be reached at <a href="http://webchat.freenode.net/?channels=%23%23disabledunion&uio=Mj10cnVlJjM9ZmFsc2UmOT10cnVlJjE0PWZhbHNl25">http://webchat.freenode.net/?channels=%23%23disabledunion&uio=Mj10cnVlJjM9ZmFsc2UmOT10cnVlJjE0PWZhbHNl25</a><a href="http://webchat.freenode.net/?channels=%23%23disabledunion&uio=d4"></a><br />
<br />
This information has also been added to the original <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/live-public-chat.html">post about the live chats</a>. Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-31684733796230878932015-05-12T18:51:00.000+01:002015-05-16T22:08:42.161+01:00Live Public Chat<i><b>Note:</b> The live chats arranged so far are done, and I don't know if we'll use that platform again in future, but I'm looking at other, more accessible platforms for more discussion.</i> <br />
<br />
Welcome, everyone, to this discussion. We have a fantastic opportunity to create a new organisation, led by disabled people, democratic and accountable. I'm hoping that we can all build an organisation, together, that we can all be happy with and can be a major part in working to ensure a positive future for disabled people.<br />
<br />
As such, I'm going to host some chat sessions so people can ask questions, find out what I'm thinking about, and let me know what you're thinking about. These will be held on IRC (internet relay chat) on the Freenode network - and if you have no idea what I'm talking about, don't worry. There will be a web interface that will be as easy to use as we can make it.<br />
<br />
I know there's a lot of interest in this idea, so the chat will be <i><b>moderated</b></i>. This is not to censor anyone - I'm making sure that anyone helping me out by moderating knows that we all need to see everything people have to say. However, this is a chance to share ideas, not a vote or anything, so we don't need to see that several people have made the same point or asked the same question. If all goes to plan, anyone will be able to ask any question or raise any point, and the moderator will copy things so everyone can see them. The only thing I'm asking of them, when they do this, is keep things at a manageable pace and avoid repetition. Asking the same question twice because you don't think I answered it will be fine. Obviously, if anyone is posting in a really disruptive way that will also be filtered out - but just asking challenging questions like "what makes you think you can/should organise this?" isn't disruptive.<br />
<br />
I know that this isn't going to be the best way to do this from an accessibility point of view - I'm unsure of the suitability of this method for users of screen readers, for instance. We will be posting a transcript after the chat, and this isn't going to be the only way for people to ask questions and share ideas. If anyone wants to post their ideas on a blog or whatever, they're welcome to do so, and if I know about them, I'll factor them in to what I post next.<br />
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If we're going to succeed at this, it will be by sharing ideas, working out what will work between us, and compromising. I know that disabled people don't all think the same, so any organisation we build to be inclusive has to allow for diversity of opinion and approaches. I have some ideas about how to do that, and I'm sure there are more.<br />
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Let's work together and build an organisation we can all be proud of.<br />
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<b>NB:</b> These chats will probably happen Thursday and Friday (14th and 15th May), one late afternoon/early evening, and one a bit later in the evening. Precise details will be posted as soon as they are decided.<br />
<br />
<b>Update:</b> The chats will be at about 20:00 (8pm) on Thursday and 17:30 (5:30pm) on Friday, and will run for up to 90 minutes. There is no separate agenda for the two, it's just running at different times to get more people involved. I know this is short notice, and there will be more opportunities to share ideas later, I just wanted to get the ball rolling quickly. They will be held in the channel ##disabledunion (note the two hashes, ##) on Freenode - the web interface can be reached at <a href="http://webchat.freenode.net/?channels=%23%23disabledunion&uio=Mj10cnVlJjM9ZmFsc2UmOT10cnVlJjE0PWZhbHNl25">http://webchat.freenode.net/?channels=%23%23disabledunion&uio=Mj10cnVlJjM9ZmFsc2UmOT10cnVlJjE0PWZhbHNl25</a><br />
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<b>Update 2:</b> I've just added a post about <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/why-come-to-live-chat.html">why I'm doing the live chat, and why you should come along</a>. Please check it out, if you haven't already.Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0tag:blogger.com,1999:blog-3519073891936055251.post-31078226534886555282015-05-12T17:00:00.000+01:002015-05-12T19:03:00.393+01:00A Union (or whatever) of Disabled People?<i>This is a reproduction of the content already posted as a guest blog at <a href="https://www.latentexistence.me.uk/a-union-or-whatever-of-disabled-people/" target="_blank">https://www.latentexistence.me.uk/a-union-or-whatever-of-disabled-people/</a> and <a href="http://loopys-rollingwiththepunches.blogspot.co.uk/2015/05/a-union-or-whatever-of-disabled-people.html" target="_blank">http://loopys-rollingwiththepunches.blogspot.co.uk/2015/05/a-union-or-whatever-of-disabled-people.html</a></i><a href="http://loopys-rollingwiththepunches.blogspot.co.uk/2015/05/a-union-or-whatever-of-disabled-people.html"> </a><br />
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Given the results of this general election, it’s more clear than ever
that we need to make use of every tool outside of Parliament to stand
up for ourselves. To stand up for our rights, our participation, our
safety and our sanity.<br />
<br />
It’s my feeling that a new national organisation, formally
constituted and mebership-based, would be a strong way to ensure the
voice of disabled people in politics, in civil society, and in the
media. I have nothing against DPAC and Black Triangle, and I hope their
work continues. Indeed, the organisation I envisage would hopefully work
with them, along with all sorts of DPULOs, and anyone else that it
makes sense to work with. The organisation I envisage would be dedicated
to constructive policy work and campaigning in all areas, not just
political. Inaccessible town centres, healthcare inequality, disabled
people’s sports – raising the profile of all these, and more, and saying
how we, disabled people, want things fixed – and having the data and
policy work to back it up. And yes, that includes working to protect the
social security that so many disabled people rely on, but also so much
more.<br />
<br />
We don’t have to call it a union – it wouldn’t exactly be part of the
trades union movement, but I see it working in a similar way. A
national executive, policy votes, meetings and similar. Of course,
meetings can never be terribly accessible for many disabled people, so
we’d do more absentee voting at meetings, and more things by referenda.
But we would have a solidly defined constitution, and membership. So it
could be called ‘union’, or ‘association’, or ‘fellowship’ – there’s
arguments for and against a lot of language options. What’s important is
that we <b>do it</b>.<br />
<br />
I truly believe that, done right, such an organisation can carry the
confidence and embody the unity of disabled people. We won’t all agree
on policies, there will be internal politics, but we can see how many
organisations out there make this work. We agree to follow our
collective will in essentials, even while being free to disagree
publicly. Not every disabled person would support it, but if we do it
right, enough will. A credible, mature and accountable voice for
disabled people on the national stage – with accountability, making it
easy for everyone to participate, and allowing for differences of
opinion without fragmenting.<br />
<br />
I don’t have all the detail worked out, but here’s my thoughts so
far. Two-stream membership, with different voting rights –
self-identified disabled people as full members, and carers and allies
as associate members. Our carers and allies are vital, and they must
have a voice, especially carers, but the organisation must be led by
disabled people ourselves. A constitution that embeds concern for
intersectionality, that we will not discriminate against disabled people
on the basis of other characteristics – be it race, sex, education,
economic status, national origin (or even nationality), whatever. Not
party-political, but admonishing all political parties (and politicians)
equally, as merited. Praising that which is good and castigating that
which is bad. Caring as much about supporting each other as about making
noise and seeking change – providing advice and advocacy would be an
excellent thing to incorporate.<br />
<br />
Yes, an organisation doing this is going to need money. I don’t
envisage employed staff any time soon, though if it takes off that’s a
possibility. But organisation generally costs money, like room hire,
renting a PO box, printing, and even legal advice. Some of that might
come from contributions in kind, and we can always hope for a few big
donors, but membership will probably need to cost money. I don’t know
how much. Perhaps charge associate members more than full members,
partly due to the fact that disabled people are more likely to be in
poverty, and partly because that demonstrates our allies’ commitment to
us as disabled people. Of course, concessional rates would be needed –
carers are scarcely in a better position than disabled people,
certainly. I’d love to sit down with some other people who are prepared
to get this off the ground and sort out these initial details. Heck, I’m
happy if other people run with the idea and I just end up a member, but
I’m willing to do work to start it – I just can’t do it all.<br />
<br />
There’s so much more that I could say: how we can directly address
businesses and other organisations, not just politicians; how we can
facilitate a structure of affiliate organisations to allow for local
branches; how a clear forum that we have ownership of will allow us to
be open about our fears and our hopes and, yes, our differences.<br />
<br />
Let’s do this thing.Sam Barnett-Cormackhttp://www.blogger.com/profile/01904395421765346531noreply@blogger.com0