A Union (or whatever) of Disabled People?

Guest post by Sam Barnett-Cormack @narco_sam

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.

Author: Ellavescent

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

  • Thanks for hosting this. I’m keen to hear people’s thoughts on details and next steps.

  • Rebecca Boot

    How can people get involved Sam? Is it worth starting a contact list or something?

    • At the moment I’m gauging interest. I think the next step would be a self-selected group doing the first practical things, but only to bootstrap things – someone has to arrange things in order to get to the point of getting everyone involved and being democratic.

      • Gerard Hales

        Need to bring in “The Big Guns” like Tanni, “Bandy Girl” and Sue Marsh etc. then may look for some profile backing like Russel Brand or Sting (or even Uncle Bob),

        • Jay

          Not Sue Marsh and not a celebrity, unless said celebrity has some form of disability. I find that celebrities do the likes of these groups for themselves and not for the people involved. I wouldn’t touch RB or Sting with a big stick, just my opinion though.

          • I’m all for celebrity endorsements, within reason, but we need to be led by ‘ordinary’ disabled people. I’d love to have the support of Tanni, for instance, but even if she wanted to, I wouldn’t want her to take charge.

          • Liam

            We can’t exclude any disabled people or carers/supporters, Sue included. If we start arguing who to exclude, we’re no better than the Government. And just because they are a member, doesn’t mean they get given any higher standing within the organisation, that has to be earned and the majority of the group voting as such.

  • I am definitely interested to know or discuss more. This is the type of organisation I think I may definitely want to be involved with. Sue and I have been discusing something like this over the last few days and weren’t sure how to go about sounding people out. But here you are!!

    I have previously avoided direct involvement with other organisations [which I would also have no problem working ‘with’, but not ‘under’ – if that makes sense?], for various reasons.

    I believe we definitely need a calm, measured, united approach to tackling many of the issues that affect disabled people *and* their carers. I am actually both, as are many other people I think.

    Living in west-Wales can be a pain when meetings etc are held in London [£120+ train fare & getting about when there with oxygen, spare tanks etc], but at least we have phones, email, skype and of course, twitter!

    A huge task, I think, but if approached in the right way from the start, this could become a fantastic ‘voice’ that would be taken seriously, and probably most importantly, *listened to*.

    • A lot of us are carers too, I think – being a carer is not the best thing for health, so people who start as carers often develop chronic health problems. Along with those of us who are in long-term relationships with other disabled people. That’s certainly the position I’m in.

      I think meetings in London would be a fantastically bad idea – such expensive venues! Though there aren’t many places that are quick to get to from west Wales…

      • Liam

        The best interconnected “central” place in the UK would be Birmingham I would of thought?

        • Birmingham and Manchester are pretty good, though also expensive. I know a very reasonable venue for medium-sized things here in Lancaster, right next to the train station, but that’s not as connected (and not for huge things, obviously, but huge is expensive anywhere).

      • Gerard Hales

        May be a seperate but associated campaign?

      • Gerard Hales

        Or both!

  • Liam

    I’m a carer and I will happily support this. I also offer my services as a website and software programmer to help in any way I can.

    I floated the idea of using Google Hangouts for meetings with Disability Labour when they formed. Nothing has come of it there yet, but here it may be of great use, especially given that you wouldn’t have to install a program necessarily (unlike Skype) and any meetings can be archived via YouTube

  • Gerard Hales

    Go for it, it is a great idea. U.K Govt. being investigated by U.N? In breach of UNCRDP (go to “Lowest Common denominator” Arafel gkhales.blogspot.co.uk -2014-)? Prepared to back this “to the max”, keep me posted will disseminate and publiscise. (“Abaris” @Williamtheb).

  • Jemma

    I would certainly be on board for this. I don’t know how well I would manage travelling to meetings, but I certainly can’t sit back and do nothing.

  • clouty

    If what’s wanted is an organisation with numbers – lots and lots of members – and an executive with clout (no pun intended, it’s the best word), then why not think about an umbrella organisation, that all the existing disabled groups can affiliate to – a kind of TUC for the disabled? I’m admin on two facebook groups, 20K members between them, I’m sure we’d join, and pay some dues… if the right people asked. There’s hundreds (maybe, never counted) of groups like mine.

    What do you think of that idea, Sam?

    • I’ve had two thoughts about organisational affiliation, and both of them could be done at the same time.

      One is membership-holding affiliated groups. Those groups would be expected to pay dues for their members, on the assumption that they are charging dues themselves, and their members would be considered members of the national group on the same footing as direct members. This allows people to have the formal relationship and most contact with their (eg) local or impairment-specific group. I can imagine this being used both by pre-existing groups, or people setting up new local branches of the national group.

      The other would be non-membership-holding associated groups, where an organisation of whatever type signs up to be associated with the national group. I’m not sure what the details of that should be yet.

      And of course, my thoughts on this aren’t the last word – I’m sure there are other ideas, and I’m trying to work on ways of having a discussion about this, and other aspects of the idea, with as many people as possible – but without it becoming chaotic. Watch this space!

      • clouty

        Of course facebook groups don’t charge membership, but we’ve fundraised for specific things in one group, which was well received. We do have members.

  • Jay

    I’m all for it as well. Meeting would be difficult though as I live in Scotland and going to most places is too far for me, as well as expensive.
    We need something that will help us disabled and long-term sick, as well as carers – I am both as is my husband – we both share our care and it’s bloody hard work. I am now terrified, along with thousands of others, about what is going to happen in the next few months, not just the 5 years ahead of us. How many of us are going to die as a result of this government?

  • I’m asking on Facebook for thoughts on possible words to use in naming such an organisation: https://www.facebook.com/sambc/posts/1102381543109375

  • anonywolf

    Yes – PLEASE! Lets do the thing. As a disabled single mum (with a disabled mother and a disabled uncle) I’d be extremely interested in joining and taking part in this.

  • Pingback: *Top Read* @narco_sam writes for @latentexistence – ‘A Union Of #Disabled People.’ #MentalHealth « Mentally Wealthy()

  • Mistynow

    I would like to see this idea carried forward as strongly feel that a lot of the present groups are too narrow in their focus IMO, would be willing to pay a membership fee and himself who is also my main carer would also support the group.

    It will be super to see a group or whatever you may call it run by disabled people and maybe being promotd by disabled people such as Tanni or the personalities who are now starting to appear regularly on our TV screens to publicise the work you intend to carry out.

  • Graham

    I would be up for this, could do with advice from legal standpoint perhaps from national unions like Unite how we go about forming a disabled union.

  • Alan Bruce

    Two things I feel need to be at the forefront, #1 Lobby #2 legally challenge

    to many Org’s out there fighting for their own corner instead of 1 party for all that has some Oomph!! 11 million disabled, membership something like £5.00 = £55 million

    We can’t hope to influence without funds otherwise the Org’s already out there would have done a better job influencing the Gov’t already!! IMHO

    https://www.facebook.com/accessabilitysupportengine?ref=hl

  • clivegsd

    A union has been mentioned many times before and many times people have said they are not interested.

    As a carer myself can I just say thanks for the “Our carers and allies are vital, and they must have a voice, especially carers, but the organisation must be led by disabled people ourselves” in one fell swoop stating that disabled people have more rights than carers and therefore making our contribution unneeded and second class. Thanks for that

    • Carers have rights and needs as well, and they are related to the rights and needs of disabled people, but they *are not the same*. I would hope that any organisation(s) for carers would have a good relationship with organisation(s) for disabled people, especially as there is that connection, but it’s hard for one organisation to do both justice.

      • clivegsd

        Well that patronising piece of nonsense will have lost any support you might have wanted from carers. And in that spirit can I just say ‘fuck you’.

        Carers are an integral part of disability matters not a separate entity, what a stupid comment, “Unity- but only for those that we think deserve it”

        • Other carers I’ve spoken to have found that explanation acceptable – I’m sorry that you don’t.

          I’m reminded of the time someone, completely for fun, hypothetically discussed names for a ‘crip list’ to parallel the Independent’s Pink List, just for disabled people instead. One carer got very upset at the idea of just being disabled people, not carers as well.

          A lot of us are dependent on carers in our day to day life, but being told “being a carer isn’t the same as being disabled” is not in any way saying the problems faced are less, or less deserving. I’m a carer as well as a disabled person, and I recognise the difficulties of both positions – and that they are different. If you read what I wrote in this post, I don’t even say that carers should be treated the same as other allies, but recognised for the special part they they play in our lives and assured a particular voice – and the reason I say that is in part because they share some of our problems, and because they have others of their own.

          Insisting that carers should be treated entirely the same in an organisation focussing on disabled people’s issues has a couple of problems, both practical and idealogical. On the purely ideological side, it runs the risk of presenting carers as the voice of disabled people, which runs the risk of looking a bit “does he take sugar” – I know it’s phenomenally rare that any carer today would have that attitude, but it’s a very emotive area. On a more practical side, it creates a situation of divided focus. Trying to capture all of the issues around disability is already a big ask, but it’s important because it creates a venue where they can all be discussed and handled in an interconnected way. Attempting to capture all issues that directly affect carers at the same time would, I feel, just make it unmanageable.

          As I said, it’s hard to do both justice at once.

          • clivegsd

            What you are actually saying is that carers should not be part of the equation, it doesn’t matter which patronising way you dress it up to defend it you are calling for “unity” but only for those you think are “worthy”.

            BYW I’m a disabled carer also, in all my time campaigning I’ve always placed both as ‘equal’, doing anything other is a joke. We aren’t a separate part of the matter we are an equal part of it. Instead of having a large body of people representing the same viewpoints you decide different. What about splitting things up even further? How about only those with physical disabilities?

            “Special part they play in our lives”, that sounds so similar to what charities and politicians use to shut us up, it’s patronising and insulting.

            And as I also said a union has been tried many times before, it wasn’t wanted each and every time it’s been attempted in the past, wonder why?

          • outinthecold

            Clive – please feel free to create a union of Carers. Otherwise please try to understand that (a) this union is an umbrella organisation to make the voice of disabled groups stronger and (b) you are a renowned nuisance maker, known for disagreeing with every voice except your own.

          • clivegsd

            Lets get this straight, you are saying carers aren’t wanted/needed/worthy to take part? Yes or no will do.

            I’ve seen what can and can’t be done or is wanted, feel ‘special’ if you want but the reality of matters is and has always been that a “union” was never wanted. I agree with people who try something that will help matters, pillocks recycling old unwanted ideas like a union with a dozen or so “supporters” will do nothing, hasn’t done anything.

            Yeah I’m known for not taking bullshit from anyone that’s why I don’t hide behind an alias ‘outinthecold’, at least I’m honest about who I am and I’m no sycophant either

          • outinthecold

            Dont put words in my mouth Clive. Carers, and their organisations would be welcome – but not welcome to undermine and over-rule Disabled people and their objectives. As a carer you are supposed to support, not decide and dictate, as evidenced by your statement about a union that isnt wanted. How dare you say what disabled people want or need? As for your use of the word “special” – well I’ll let others decide about you, and your choice of words to a disabled person. Basically Clive, if you dont like it – dont join.

          • Bea bragg

            How rude.Your view of disability appears to be centered on your own experience and bigotry ,just because you are disabled does not give you the right to speak for the whole of the disabled disabled community or family carers.I am a family carer and claim my right to speak for my son but by son alone I would not dream of generalising my right to speak for others. I intended to join in support and was inspired by the idea of a Union but as I would not have an equal right to have our opinion heard or vote I would find it impossible to get involved. I do not like discrimination/marginalisation by any group, of other groups and that includes family carers. Who are you ‘out in the cold’? If you want to be elected as a leader we will need your real name? Are you Simon Stevens? After saying that I will of course support from afar and watch with interest of developments as it would appear that is all you require from me and the millions of family carers in the UK? You will of course be excluding my son who is nonverbal and has severe Learning disabilities but then so does society its not a shock .Finally I notice a family carer Pat Onions is promoting your idea on change.com. Bye for now..Solidarity!

          • Well, that makes the positive response I’ve been getting pretty weird…

          • clivegsd

            You must be right, it’s teaming with replies here I see

          • Can I just add my agreement to Sam and outinthecold here – disabled carers speaking as disabled people is great. Carers speaking _for_ disabled people who are trying to make their voice heard themselves is not wanted. Carers would absolutely be wanted to join the organisation, but not to speak over disabled people.

          • Bea bragg

            What a shame you have just excluded my son who has severe Learning disabilities and is non verbal from the Union before it has even got off the ground .I think you guys may need some equality training .I speak for my son and have a foot in both camps.Deal with it.

          • It’s worth noting as well that one area I haven’t touch on is disabled people who are truly unable to speak for themselves – which does occur, of course.

            That’s a hugely complicated area in terms of competing priorities, and I don’t know how to solve it – but I know it does need to be addressed in a way that works for everyone.

          • Bea bragg

            Not complicated at all Sam.People who are unable to speak either have augmentative devices or have Family carers speak for them. This works for us and in law I don’t see why it does not work for you?

          • When I said “unable to speak for themselves”, I didn’t mean to include those literally “unable to speak” but able to speak through assistive technologies – obviously such people can speak for themselves in a real sense.

            In the case of people who can’t do that, there are complex questions in theory about how those who speak for them are received – there have been individual cases where there has been contention over who speaks for them and what they say. These get resolved, for better or worse, when it’s a legal question – because someone has to be able to make decisions. However, I’m aware of there being cases where people in the disability movement have questioned the case of people speaking for their loved ones as “a disabled person”, and I don’t know enough about it to form a reasoned opinion.

            On the one hand, these people can’t be completely robbed of their voice, that would be intolerable; on the other hand, people question whether their carers are speaking, in any given case, more in the interest of the disabled person, or in their own interests. Clearly there are cases where the person speaking for them is doing so in the best interests of the disabled person (as far as they understand them), and there have clearly been cases to the contrary. Ignoring either possibility would be unfair to someone.

            It may be that the most practical way to handle it is to allow the designated carer to speak and trust them, but it’s my feeling that it would need examination from people more knowledgeable than me, so I’m not going to presume to take a stand in either direction.

          • Bea bragg

            You sound like a social worker and implying some form of screening or capacity testing by the local authorities .One must assume capacity that’s why ”these people”are lawfully able to vote

          • I’m saying “I’m aware that there are concerns, it seems to be a complicated question, and I’m not qualified to come to a conclusion”. That’s all.

            And I’m not sure why me referring to people unable to speak for themselves as people justifies scare quotes.

          • Bea bragg

            Law. Only convicted
            prisoners and members of the House of Lords, are not allowed to vote:A person with Learning disabilities may ask someone else to help them cast their vote.
            The person helping the voter with a learning disability must either be a ‘qualified elector’, i.e.
            someone able to vote at that election or be a close relative who is at least 18 years old.I hope this helps solve your conundrum and puts into perspective some of the points I have made.

          • If there is a law that makes it clear for elections, then there’s a law, but I’m not a lawyer. I don’t know if that law applies to anything other than public elections.

            Like I say, I don’t have the expertise. That’s all I’m saying.

          • Bea bragg

            If you want to to be a truly inclusive democratic organisation then following the law in relation to the initial ToR wont be a bad thing will it? Avoids incrimination and discrimination

          • If a disabled person is capable of communicating their voting preference via their carer then they would be a member of the group in their own right. You seem to be confusing not wanting carers to speak over disabled people with not wanting disabled people to speak via carers.

          • Bea bragg

            Equal Opportunities ) Act 2004.says Carers should not be’ Disabled by association’ why? Because we are.Unfortunately this act has not made much difference .You should not exclude people because of difference. The disabled movement is years ahead of any Carer movement even with the Government attacks, Carers have been marginalised,but the worm will soon turn . ”Does your carer take sugar?”Must hit some familiar sore spots for the disabled community and explains we struggle together but at different times. http://www.lukeclements.co.uk/wp-content/uploads/2013/11/2013-Does-your-carer-take-sugar-prepub.pdf

          • That doesn’t appear to be in the Carers (Equal Opportunities) Act 2004 (from my quick reading of it – it’s a pretty short Act); there is a concept in law of “(disability) discrimination by association”, which isn’t the same as “being disabled”.

            I absolutely agree that carers have rights, and not enough recognised in law. I agree that carers face a lot of problems and are underappreciated by society. I don’t think the disabled people are to blame for the plight of carers, though.

  • Al Cider

    Better to join and influence existing democratic structures than start yet another one. We have a Claimants Union in Birmingham and one being set up in Coventry. There is the Edinburgh Coalition Against Poverty and the Ipswich Coalition Against Poverty.

    There might be something in your area.
    You will still have common cause and relationships with DPAC/BT (and other national movements) as well as your own broader interest local community movement. Take it from me, as a member of Birmingham Claimants Union from its inception, there are a lot of headaches and teething troubles in setting these things up from scratch.

    • I’ve done some organisation building before – I know what kind of headaches there can be 🙂

      But a local organisation focussed on one area of concern to disabled people isn’t the same as a national organisation with a care for all things that particularly affect disabled people.

  • Alan Bruce

    A Union (or whatever) of Disabled People
    Well it would take more than a name to influence the Gov’t otherwise the Organisations already out there fighting their own corner would have made a difference to the policy’s we now endure. we need to Lobby strongly and legally challenge all policy’s as a group not individual needs. Money is a key to getting through to Gov’t.
    to do that a membership of say £5.00 with 11 million disabled in this country would be a good start! IMHO

    • iNgobe

      Those worst affected by welfare cuts, which are targeted at the most disabled precisely because they are least able to complain, may not be able to afford any membership fee at all, but need the most help, and need help very urgently – preferably before George Osborne decides what cuts to announce on 4th July.

      This help can only come from a VERY large organisation (multiple medium and small competing disability groups have so far proved ineffective in achieving any change at all) so in order to gather enough supporters for campaign/s regarding disability needs or rights, we will need not only as many disabled members as possible, but as many carers and as many able-bodied people to support the campaign as possible. This support can most easily be demonstrated by signatures on petitions or numbers of members, or numbers of followers or Likes on social media, and considering that only an enormously powerful voice (a very large number of members/likes/followers/signatures) is likely to have any influence on the public or the current government, for the time being it would be best not to put impediments in the way of gaining that support, especially as events are already moving very quickly in a direction to the considerable disadvantage of the disabled. Formal membership of a Union, membership fees, exclusionary criteria etc will all offer barriers to potential support and thus reduce both the size and the power of the group. Signatures collected at meetings, in shopping centres or online are gathered more easily the simply and quicker the process is.

      I do think the formally constituted organisation you are trying to set up is a very laudable goal to be aiming for in the long-term @SamBC, and I am very glad you have taken the initiative to do this. Unfortunately a government willing to consult with a disabled group such as this Union, one willing to listen and to actively cater to our needs, has NOT been elected, which very sadly makes even the most efficient and united of public interest organizations impotent (although hopefully not for ever).

      If a Union of Disabled people is to succesfully tackle an ongoing attack on disabilty rights, then it’s immediate focus must be on the most effective action to aid the most needy, focusing on the most critical issues, which range from life and death situations where support really is needed to save lives, through housing and social care, before comparatively less urgent issues such as improving access to work for those well enough to work, and access to leisure for those who can afford it, as well as working to change attitudes to disability in general. Even those who are well off enough to have so far been protected from the effects of austerity, must recognize that the campaign to demonize the poor and disabled in order to make welfare cuts easier to implement, has impacted on perceptions about disability that affect us all.

      Unless we work together with the able-bodied public to create a massive movement very quickly, the impact of further demonization accompanying and justifying further cuts will not just kill many more disabled people but ruin the lives of thousands and divide society irreparably.

      So, while I agree with the long-term ambition to set up a properly constituted organization for disabled people only, at present that type of organization with its ‘exclusive’ and thus divisive focus may be counterproductive. We need the broadest possible unity right now so that we can work together to make changes which will hopefully allow more focused groups to be consulted in future, as without this broad movement, there won’t be anybody to listen to demands from disabled groups or carers groups or any other maligned or dispossessed groups in future. If necessary an exclusive and an open group could be formed simultaneously, but I suspect that would have the same effect of reducing support for the open goup just at the time when as much support as can possibly be found, in the shortest space of time, is so desperately needed.

      • Alan Bruce

        I thank you for your time and trouble to reply but find the notion that signature’s will have any effect on a Gov’t that has already ignored any legal edicts (IDS) and go on to listen and act is IMHO laughable. strip us of our human rights and signatures will not even be allowed because it will become a terrorist act! Money talks the Gov’t know that and spend enough of our money defending their principles and appealing any judgment’s against them, apply a membership with voluntary payments and ask others to supplement those that can’t pay.
        The Conservative’s only respect money they need to respect fear from those that will not stand for the punitive attacks on the sick poor and disabled! Bring Back Oliver Cromwell who cleared out parliament of those only looking after their own interests. 🙂