Last week, we held the first regular DPULO discussion on Twitter. (For the background to the discussion, please read this post.)
The topic was “What is a Disabled People’s User-Led Organisation?” Around 25 people were actively engaged in the discussion, with a number of others “listening in” via the #dpulo hashtag.
Below are the key themes and points that came up during the discussion.
- DPULOs should be pan-impairment and operate from the social model of disability (though see questions for future discussions below)
- Achieving 75% or more disabled people on the Management Board of a DPULO can be a tricky balance when also needing the right skills
- There can be lots of different types of DPULO, e.g. Enabled By Design (EbD). EbD didn’t necessarily think of themselves as a DPULO in the first place, but came to see that’s what they were
- How representative are DPULOs of people with complex / profound impairments? It is very key that appropriate support is there for all people, and this builds on a good relationship and understanding with that person and their family.
- Similarly, the right support is needed for volunteers to be a part of DPULOs as well
- Sometimes people have been excluded from taking part in DPULOs because they have had to attend in person. However, online activities – particularly social media – is one way to overcoming this
- “Service user” versus “lived experience”. People participating in the discussion felt it was vital that people engaged in DPULOs have lived experience not only of impairment, but also of particular service/policy areas. An example was given where an individual chaired a user subgroup to the Adult Safeguarding Board. The interest and experience of safeguarding was more important in this case than the fact they were a service user.
- Should disability be treated differently to gender, BME, LGBT etc. organisations? If so, in what way(s)?
Exchange of the discussion:
I still always want to ask ‘user of what?’ when I see ‘Disabled People’s User Led Organisation’ Anyone else get that? #dpulo (@MarkOneinFour)
“User of what”? How about user of disability provisions in Equality Act All disabled people will use them to some extent (@atar2k)
@MarkOneinFour @atar2k If people don’t think of selves as a disabled person or know what the Equality Act 2010 is, they might miss out on services of #dpulo? (@fayesavage)
I see ‘claiming’ disability as way of accessing more stuff, others see it as taking away from their life (@MarkOneinFour)
- What is a Disabled People’s User-Led Organisation?
- The Department of Health’s previous definition of a “ULO”: the 21 Design Criteria (pdf)
Next regular #dpulo Twitter discussion
The next Twitter discussion will take place at the same time next week: 8pm on Tuesday 6 December. The topic will be: How can we ensure DPULOs include all disabled people?