One of my major concerns with user led charities, apart from the fact they fail to represent the majority of people they claim to speak for, is that they appear to be deliberating ignoring the obvious and focus on the same old issues regardless of the changing environment about them.
If we take the issue of independent living, these charities would you have belief the majority of working aged disabled people are still locked in care homes or simply stuck at home with no escape like we were in the 1970s. The campaigns for independent living totally ignores the current social care agenda and indeed the lived experience of disabled people, arguing how many people have lived since the 1990s will not be possible until 2025.
In a desperate attempt to keep a never ending flow of funding, they have simplified their messages to the point they have totally lost touch with real users, who are often battling or bobbing along in the real world with no support from anyone. Again, it is real disabled people who just get on with it because that’s life while user led charities have found the succulent fresh meat of people who are long term sick to feed upon, who have opportunities if they simply reach out and grabbed them.
The big question is do disabled people need these charities pretending to represent them when they are so obviously out of touch with what is going on?