Friday, 15 May 2015

Transcript of Live Chat 2

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.

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.
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
May 15 17:38:39 <SamBC>    But we will hopefully build on yesterday as well, and cover some different topics.
May 15 17:38:50 <SamBC>    The transcript of yesterday is up on the blog.
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.
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.
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.
May 15 17:40:21 <SamBC>    This is just done to stop it getting too 'busy', so people can follow it slightly more easily.
May 15 17:40:28 *    iNgobe (5165c830@gateway/web/freenode/ip. has joined
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.
May 15 17:41:09 <SamBC>    So, once again, welcome everybody! Does anyone have any topics they'd like to cover today?
May 15 17:42:26 <SamBC>    <becca_boot> Have we got any specific or general goals for the union/thing yet?
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?
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.
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?
May 15 17:43:25 <SamBC>    And that connects to it a bit, too...
May 15 17:44:23 <SamBC>    <Jan777> And those with chronic illness?
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.
May 15 17:44:48 <SamBC>    I agree with becca_boot on that. It's all included.
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:
May 15 17:45:42 <SamBC>    (now with added commentary)
May 15 17:46:01 <SamBC>    So that has a working definition for disability in it - a very inclusive one.
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?
May 15 17:46:28 <SamBC>    Given how hard benefits are to get, I think self-identification is the fairest way to do it.
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?
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?
May 15 17:48:28 <SamBC>    I think it needs to encompass that, but be more than that.
May 15 17:48:47 <SamBC>    <eskimogremlin> it has to be self identified as disabled
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.
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.
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'
May 15 17:50:45 *    iNgobe (5165c830@gateway/web/freenode/ip. has left
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 :)
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"
May 15 17:51:20 *    iNgobe (5165c830@gateway/web/freenode/ip. has joined
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)
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
May 15 17:52:54 <SamBC>    <Jan777> Anyone whose day to day life is adversely affected by their condition?
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.
May 15 17:54:24 *    DavidGillon (5ceee065@gateway/web/freenode/ip. has joined
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
May 15 17:55:14 *    spoons4all (586d5570@gateway/web/freenode/ip. has joined
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.
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.
May 15 17:56:57 <SamBC>    Going back to something else someone mentioned at the beginning, but I hadn't relayed yet...
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
May 15 17:57:01 *    Jan777 has quit (Quit: Page closed)
May 15 17:57:09 <SamBC>    <Jan777> Sorry I have to go now - looking forward to write up & future
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.
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?"
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)
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.
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.
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.
May 15 18:01:05 *    iammrj has quit (Ping timeout: 246 seconds)
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.
May 15 18:01:21 <SamBC>    That sort of planning is easier once we have some degree of organisation behind it, I think.
May 15 18:01:48 <SamBC>    Going back to definitions, at least briefly...
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
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.
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.
May 15 18:03:51 <SamBC>    So, there are a couple of related comments I'm going to relay now and try to address...
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
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'?'
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.
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.
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
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,
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.
May 15 18:07:27 <SamBC>    Even if it isn't by being a formal umbrella organisation, we can still do that.
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
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.
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.
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.
May 15 18:08:57 <SamBC>    <eskimogremlin> i think an umbrella group is needed more than duplicating whats already been done
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.
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.
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
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.
May 15 18:13:12 <SamBC>    Quick sideline into carers...
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
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
May 15 18:14:00 <SamBC>    (Principles are on the blog, I'll share the direct link again in a minute)
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)
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.
May 15 18:16:00 <SamBC>    <iNgobe> Why this focus on who to exclude?
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.
May 15 18:16:50 <SamBC>    So, I would accept ANYONE as members. Full stop.
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.
May 15 18:17:34 <SamBC>    But I do want them to be involved, and engaged, and have a voice within the organisation.
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.
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
May 15 18:18:42 <SamBC>    That's a great example, DavidGillon
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)
May 15 18:19:01 <SamBC>    That's one option I've been thinking of, techiecarer
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.
May 15 18:19:53 <SamBC>    <becca_boot> So would having three types of membership be helpful? "disabled", "carer/enabler" and "ally"
May 15 18:20:09 <SamBC>    <DavidGillon> My preference would be to have carers as non-voting, but participating observers
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.
May 15 18:20:56 <SamBC>    If they're disabled, they are fully voting.
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.
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.
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.
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.
May 15 18:23:33 <SamBC>    <DavidGillon> Split voting - the disabled vote sets policy, the ally vote comments on policy.
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.
May 15 18:25:37 <SamBC>    <techiecarer> Just a note, Labour have just abolished that system for the One Member One Vote system
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 :)
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,
May 15 18:26:50 <SamBC>    Indeed. Perhaps voting rights would depend on what was being voted for.
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
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.
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
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
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
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.
May 15 18:29:06 <SamBC>    There's activism and activism - and the more people the better for almost all sorts of activism.
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)
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.
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.
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
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
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.
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.
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 :)
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?
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
May 15 18:33:51 <SamBC>    (sorry, a couple of messages are out of order - iNgobe's was before DavidGillon's)
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.
May 15 18:34:42 <SamBC>    That's all.
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
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.
May 15 18:35:42 <SamBC>    And from that will flow as much unity between organisations as we expect.
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.
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.
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.
May 15 18:37:18 <SamBC>    That's all the question of disabled versus ally members is about.
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.
May 15 18:37:31 <SamBC>    Exactly, Pip, thank you.
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
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.
May 15 18:39:35 <SamBC>    <Pip> But certainly, I'd hope we'd have lots of inclusion for carers and support services etc.
May 15 18:39:43 <SamBC>    <Pip> I mean, support for our carers. Should have put that better.
May 15 18:39:54 <SamBC>    <Pip> I mean, support for our carers. Should have put that better.
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.
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
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.
May 15 18:40:46 <SamBC>    <iNgobe> What decisions are thesse you are talking about? This group is never going to become a government?
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?
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
May 15 18:42:00 <SamBC>    Along with decisions like "who will be on the executive for this organisation"
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.
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.
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"
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?
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
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
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*
May 15 18:45:49 <SamBC>    (The principles I mentioned earlier:
May 15 18:45:56 <SamBC>    <Spoonydoc> trust me, i dont think we share the same values. I have large experience of that.
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
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'
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.
May 15 18:47:45 <SamBC>    <iNgobe> Why one vote one member is best
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.
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
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.
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
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
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 :)
May 15 18:50:03 <SamBC>    But it's highlighted a difficult issue (or set of issues) that will need to be thought of.
May 15 18:50:10 <SamBC>    <Spoonydoc> so what is next step.
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) :)
May 15 18:50:46 <SamBC>    At least, that's my next step :D
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.
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)
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 :)
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
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?
May 15 18:54:11 <SamBC>    <eskimogremlin> i think gettin a forum is whats need keep ideas flowing
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
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.
May 15 18:54:59 <SamBC>    <iNgobe> Gathering members and uniting the divided factions of disability groups still seems more urgent than anything else
May 15 18:55:10 <SamBC>    GoogleGroups might work, for instance.
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.
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)
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.
May 15 18:56:49 <SamBC>    <iNgobe> I'm sure we can.
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!
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)
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
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.
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
May 15 18:59:04 <SamBC>    And we'll get something set up.
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?
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.
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.
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.
May 15 19:00:47 <SamBC>    I'll also post the transcript of this ASAP.
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.
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.
May 15 19:01:57 <SamBC>    (guest post something by them on the blog I run, that is)
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 :)
May 15 19:02:28 <SamBC>    Thank you all for coming and sharing your thoughts. It's been great.
May 15 19:02:33 <SamBC>    And the last comments I hadn't copied:
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
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
May 15 19:03:00 <SamBC>    <iNgobe> Thanks ve much for doing this

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