Those who follow me on Twitter (@rich_w) will have seen me use the #dpulo hashtag quite a lot.
In your quieter moments, you may have asked yourself: what on earth does he mean by this?
A DPULO is a Disabled People’s User-Led Organisation, and I use the hashtag whenever my tweets relate to work I’m doing on the Strengthening DPULOs Programme for the Office for Disability Issues.
As with most issues of language and definition relating to disability and/or the voluntary sector, the definition of “DPULO” isn’t, necessarily, straightforward. Thus, the following describes the definition the Strengthening DPULOs Programme is using (this is the “we” below) and some of the debates that often go on around this topic.
It should be noted, though, that one of the key pieces of work we’ll do over the course of the 4-year programme is work towards a (possibly new) definition of a DPULO. This is therefore something of a work in progress.
The core definition
At a fundamental level, a DPULO is an organisation run by and for disabled people. That’s the easy bit, but let’s unpack what this means.
By “disabled people” we mean anyone who has rights under disability law. This includes people with learning disabilities, long-term health conditions, mental health conditions, physical impairments and/or sensory impairments. Some DPULOs also include people who self-identify as having an impairment.
By being run “by and for” disabled people, we mean:
- At least 75% of the people on the “governing body” of the organisation (such as the Management Board) are disabled people
- At least 50% of staff are disabled people
- At least 50% of volunteers are disabled people.
We also want the organisation to be run on the basis of the social model of disability, rather than any of the other models (such as the medical model or charity model).
Since not all organisations can start immediately with these proportions of trustees / directors / staff / volunteers, we also appreciate those organisations that can concretely demonstrate they are working towards becoming DPULOs.
What about carers / older people etc.?
Previous work on user-led organisations included in the definition of ULOs (rather than DPULOs) the explicit involvement of carers and/or older people.
It’s important to note that the definition of DPULOs doesn’t exclude this – a carer or older person could be part of the 25% on the governing body. It’s also important to note that carers themselves can be disabled people.
Recognising the similar-but-different issues relating to carers and disabled people – as well as the associated power dynamics that can underpin relationships between the two – the definition of DPULOs doesn’t include explicit reference to carers. Where carers aren’t involved in the management of a DPULO, though, then one of the things I personally look for is how a DPULO works with carers organisations.
Similarly, explicit recognition of age isn’t included in the definition of DPULOs. As well as DPULOs working with age-specific organisations (both young and older people), it’s also worth noting the positive correlation between impairment and older age.
What about BME / sexual orientation etc.?
DPULOs should, of course, aim to be representative of their local populations as far as possible. In this, they are no different to any other good public, private or voluntary sector organisation.
What about the Department of Health’s 21 Design Criteria?
Those folks who have been around user-led policy and practice for a while will know that the Department of Health previously did some great work on User-Led Organisations. In doing so, they coproduced a definition of a ULO that resulted in the 21 Design Criteria. Though these criteria were good and very useful, I think it’s fair to say they were a bit onerous. There was also the interesting dichotomy – arising from self-assessment against the design criteria – whereby some organisations you would expect to be a ULO didn’t think of themselves to be a ULO and vice versa.
What other organisation descriptions are there?
As with any question of language and definition, there are other descriptions of disabled people’s organisations. Below are a couple of the main ones I’m aware of, and how (in the context of the definition of DPULO used above) they differ from a DPULO.
- Disabled People’s Organisation (DPO) – This is an organisation for disabled people. The key distinction here is that, though the DPO may work on behalf of disabled people, it may not necessarily be controlled or run by them.
- User-Led Organisation (ULO) – This is an organisation that is controlled or run by users of the organisation, but these aren’t necessarily only disabled people. Typically, ULOs include carers or older people. Similarly, a ULO can also be an organisation run solely by the “beneficiaries” of the organisation’s work, e.g. people from a BME background, LGBT people.
- Disabled and D/deaf People’s Organisation (DDPO) – This is an organisation possible of and/or for disabled people that explicitly includes D/deaf people.
Dissertations and theses running to 100s of pages have been written on this topic. A relatively long blogpost such as this is therefore only likely to scratch the surface of what is or isn’t a DPULO. I hope, though, that this has given a flavor of what is meant by the term DPULO.
At a fundamental level, I hope I’ve conveyed the idea that – drawing on some basic building blocks – a DPULO is whatever local disabled people want it to be and is an organisation over which they have control.
arbitrary constant 
Thanks Rich – really grateful for the clarity, and the explanation that the definition is still a work in progress. But I’m still stuck on that first essential – which you say is the easy bit, but I’m not sure it is.
“By “disabled people” we mean anyone who has rights under disability law.”
That isn’t as clear cut when you come to mental health groups. Disability, for whatever reason, is still understood by many people to mean physical and visible disabilities, so many of us just don’t self-identify as disabled. A huge proportion of people experiencing mental health challenges, including those sectioned under the Mental Health Act, will tick the ‘not disabled’ box on an equalities form.
Someone must have the statistics to show what percentage of people using mental health services self identify on the equalities form as disabled. That would exclude people who don’t or can’t access services, but could give some idea of whether its an issue or just my guess.
If people don’t self identify as disabled, how can I, and you, ensure that our management committee is made up of 75% disabled people?
Hi Karen – thanks as always for your thoughts, which are much appreciated.
Before I directly respond, there’s a bit of research by the (then) Disability Rights Commission that I’ve always been interested in: it says approximately 50% of all people who would be considered a “disabled person” under the law don’t consider themselves to be disabled. This includes people across all impairment groups and across many long-term health conditions.
Thus, the issue you raise is an important one, and one that doesn’t just include people with mental health conditions.
It’s an issue that things like the Social Model of Disability have been in response to – a “different” way of thinking about disability that shifts the emphasis from the person to the way in which the person was treated.
Dissertations and theses have been written on this topic – I’m sure you’ve read a few of them, as I have!
Into such a complicated issue – that includes the very difficult question of language – is the issue of what to call organisations that are run and controlled by disabled people. To some extent – and to be perfectly honest – it’s not going to be something that will ever be settled.
Given the complexity of the issues and the language, the current definition above is one of the best (and most concise) there is. But it’s recognised that work needs to be done – thus it being a “work in progress”.
In the face of this, what the Strengthening DPULOs Programme tries to do, therefore – and fully recognising the point you make above about the “traditional” views of disability – is ensure that we share information about the programme as widely as possible. This includes going to specific networks relating to, for example, mental health or learning disability. (If you know of any we should be liaising with, let me know!)
Ultimately, if a group of people running an organisation don’t consider themselves to be covered by the intent of the programme, then they don’t have to be involved. I hope, though, that it’s essentially the flavour of an organisation being run by and for the people that benefit from the organisation – represented by the desire to see good proportions of trustees, staff and volunteers represented throughout the organisation – that comes through.
Some useful an interesting definitions / thoughts from Shaping Our Lives: http://www.shapingourlives.org.uk/definitions.html