Thursday, 21 May 2015

Google Group Set Up

Okay, 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.

Alternatively, I can manually add people who don't have Google accounts (I think). Let me know if you want me to do that.

You can join on the web at!forum/union-of-disabled-people-discussion/ or by email by emailing

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.

IRC didn't work too well, but let's see how this works.

Wednesday, 20 May 2015

What's in a name?

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 something as the title.

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.

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.

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.

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.

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.

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.

So I have no answers here. I'd love to hear your thoughts in the comments.

Sunday, 17 May 2015

Reflections on the Live Chats

Thursday and Friday just gone, I hosted two 90-minute live chats on IRC, the transcripts of which are available on this blog (chat 1, chat 2). 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.

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.

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.

More 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: "What NOW? #TogetherWeCan"

Saturday, 16 May 2015

People and Personalities

There's an excellent piece at Ramblings of a Fibro Fogged Mind that's relevant to this endeavour: "Tarnished with the same brush..."

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 are involved are people who worked with Sue, or under the same banner (the entirely accidental 'Spartacus'), and thus automatically suspect.

Should we be afraid? And other reactions to Anne Begg

The excellent John Pring of Disability News Service has spoken to Dame Anne Begg since she lost her Commons seat in the recent general election. What she said has a lot of relevance to this effort.

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.

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 "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 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 draft principles I have shared.

I absolutely agree with Anne Begg on this:
“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.

“That’s a slow process, but if you start to get results and have an impact then people start to sit up and listen.”
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.

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.

Thursday, 14 May 2015

Transcript of Live Chat 1

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.

My thoughts... Principles for a Union of Disabled People

This is taken straight from my rough notes. ORGNAME is a stand in for whatever the organisation ends up being called.

Commentary is interspersed among the principles, explaining what my intention was, and why I chose to put it the way I did.

These are just my ideas, and are completely up for discussion. Comments, as always, are welcome. 

Live Chat - web interface

Just a note to let everyone know the web interface to the live chat can be reached at

This information has been added to previous posts as well.

Wednesday, 13 May 2015

Why come to the live chat?

So, I already posted about the live chats 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.

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.

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.

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.

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.

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 fait accompli, a done deal.

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:
  • What will be the essential principles of the union, and what will be its aims?
  • How will it make decisions?
  • What kind of things will it do, and how will it do them?
  • How will money be raised and spent?
  • How will meetings be run?
  • How will it relate to other organisations, existing and ones that may be set up in the future?
  • Should we even be doing this?
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.

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 will share my ideas, and the reasoning behind them, but I hope to be asking questions as much as I answer them.

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.

I hope to see as many of you as possible in the live chats.

We can do this, together.

Dates and Times for Live Chat

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

This information has also been added to the original post about the live chats.

Tuesday, 12 May 2015

Live Public Chat

Note: 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.

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.

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.

I know there's a lot of interest in this idea, so the chat will be moderated. 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.

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.

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.

Let's work together and build an organisation we can all be proud of.

NB: 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.

Update: 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

Update 2:  I've just added a post about why I'm doing the live chat, and why you should come along. Please check it out, if you haven't already.

A Union (or whatever) of Disabled People?

This is a reproduction of the content already posted as a guest blog at and

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.

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.

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 do it.

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.

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.

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.

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.

Let’s do this thing.