A user led organisation is an organisation which has been set up by users of a specific section of society with a specific location whether that be ‘disabled people’ generally, users of a specific service, or have a specific impairment, with the intention of representing users on various issues or providing user-led services to local users. While the majority of the trustees of the organisations will be users, the organisation’s staff and volunteers may not be users.
User-led organisations can use their unique selling point to jump to the front of the queue in terms of tendering for user-involvement work as they can be regarded and see themselves as top dog, but I would like to question whether this assumption can always be warranted. There are two concerns I wish us to consider.
The first is that being a user of specific services or a member of a specific section of society that can not always mean you know what all other users desire and think, and we all have different wants and needs, as well as opinions. The trustees of any organisation will have opportunities and privileges that will ensured them to reach their position that many users may not have. So the question is can any organisation made up of individuals with differing viewpoints throughly be considered as able to represent a wider proportion of people?
The second concern is that when any organisation begins to employ staff its agenda and objectives will change as its moves from a collection of individuals brought together as equals with a common goal, to a single legal entity with a responsibility to survive for the sake of the livelihoods of its staff. This means that the core objective of the organisation may move from doing good to simply surviving for the benefit of its staff. This means that the decisions taken by the organisation may move away from the best interests of users and towards ensuring its survival by following funding opportunities that do not necessarily fit into the original aim of the organisation.
A final point is I feel many user-led organisations have found it easy since 2010 to fall into blindly endorsing the anti-government rhetoric of the new sickness and disability movement without making any kind of considered opinion based on rational understanding. They will easily adopt the medical model messages that see disability is just a welfare issue, that it is about looking after the naturally inferior, because it looks politically correct. This replaces the social model thinking around the inclusion of people with impairments that was fashionable before 2010.
Therefore it has to be questioned as to whether user-led organisations assist users or are merely dependent on user’s dependency on them to survive beyond their original intentions. These organisations were created to be a fresh start for the representation of users against more oppressive family and professional led organisations, but have they now become corrupted to be the oppressors to a new generation, those who use social media to organise themselves?
So when you encounter an user led organisation, it is important to look beyond their rhetoric and towards their track records on how they really represent and empower users, as opposed to simply doing anything to survive regardless of what is in the best interests of users!