For this post to make sense to any regular readers, please see this blog.
First off I just want to say that I think this is an excellent idea, and could really push forward the voice of disabled people in this country. I agree with everything Sam Barnett-Cormack said here, but I'd like to take the opportunity to add some thoughts of my own.
I want to make it clear from the start, but without rambling into too much detail, that some of these ideas have been floating around in my head for a while, and I feel that they could find a 'home' in this proposed organisation. Other ideas I have developed since this union idea was proposed.
I have been reading a lot of what has been said about this potential organisation (although I am aware that I will have missed some stuff due to not being on Twitter). The intention has been to be very open to ideas and wanting to build the organisation from the ground up. From a personal perspective, this has been great. It is allowing me to have a say and put my ideas out there, when I'm not very well connected with the disabled community in the UK and haven't been part of organising the campaigning which has taken place over the past few years .
However, there seem to be an awful lot of people going 'where do I sign up?' and just wanting it all to be there for them to join. The fact is that some people, like me, are interested in the fundamentals of the project, and others just want something tangible that they can sign up to (or not). There is also the issue of it being progressively more difficult to do something on a very practical level the more people you involve.
I think that a focus group needs to be formed. By all means, allow anyone who wants to volunteer for it, but we need a small group of people who are dedicated to the practical purposes of getting this thing off the ground.
Once the focus group is formed, publish who is in it and some contact details. People who don't want to be as involved need some clarity as they look in from outside. The purpose of the focus group would be to collate any ideas that are forthcoming (the group might want to ask the disabled community again to contribute their ideas, or perhaps survey them about possible ideas) and come up with a constitution and organisational structure. A draft could then be published for comment by anyone, and/or a survey could be used to determine what people think. The focus group would then finalise the documents, and facilitate nominations for the executive committee and open a membership list. The members would sign up and then vote in the first exec.
As the intention is to be very all-encompassing (an approach I wholeheartedly support), my view is that a robust structure is required to ensure that all the different areas of disabled life in the UK are covered. My vision for the structure would be the following:
- An executive committee, comprising a chairperson, secretary, treasurer and probably a membership secretary, along with a number of portfolio posts for different areas such as social care, transport etc.
- A number of focus groups, one for each area. The person holding the portfolio on the exec would facilitate the focus group which would be comprised of 6-8 people not on the main exec.
- Each focus group would research and plan projects for their area, and draw help from the wider membership for extra people to make the projects happen. This would spread the workload as much as possible.
Possible areas to focus on that I've thought of so far are: advocacy and peer to peer mentoring; access to businesses and services; transport and travel; social care; health; housing; leisure and hobbies; access to work and benefits; education; carers; hate crime and discrimination; family life. Some of these could possibly be combined in order to reduce the number of focus groups and exec positions.
To make this work on such a scale, I think we need at least 200 members.
I would like to see the organisation providing affiliate membership for existing DPOs and also localised groups such as access groups. This would promote networking and information sharing between groups, and also help focus groups plan projects that compliment and support rather than replicate work already being done.
I am secretary for the access group in my town, and I think local groups is a good model for tackling access issues. So, for example, the access focus group could, as it's first project, create a national network of access groups, with a central resource hub online. This would mean different groups could share ideas and knowledge. Also people wanting to start an access group in their area could be supported to do so.
The idea that's been floating around in my head for some time is the idea of fulfilling lives; disabled people having the opportunity to thrive and flourish as human beings, just as everyone else does. There is a kind of backstory to this in terms of my experiences and things I feel are important, which I have written, but this post is going to be far too long as it is. If anyone is interested, I can publish it as a separate post.
I feel this idea of fulfilling lives fits quite well into the union idea, because it's about all aspects of life, not just benefits, work, social care and health, which have been the major campaigning themes of the past few years. It's no good having access to businesses if you can't leave your home, and assistance to work is no good if employers won't give you a job. All issues facing disabled people interact and intersect, and to truly improve the lives of disabled people in the UK, we need to give some attention to all of them.
Some general principles that I think could be incorporated, that came up with when I was thinking about this vague idea of mine were:
- A self empowerment movement and mutually supportive community based on the idea that every disabled person has the right to live a fulfilling life and that disabled people are awesome at creating their own solutions.
- Fostering the rejection of society's ideas about us, and promoting a sense of self worth based on being a unique human being.
I see advocacy and mentoring projects being key elements of fulfilling these principles. I have a few other ideas floating around but they are a bit specific for this stage.
Overall I think that this union idea has so much potential, but we need to develop something really tangible in order to inspire people to get involved.