We were sent some images for a new post for the Rightfullives website a while ago and in addition to the images themselves, the organisation supporting the campaign that a group of individuals had set up, had sent in their own introductory text for the exhibit that explained the centrality of its own contribution to the whole venture. It’s a classic example of PR and branding in practice, they wanted to be sure that the good work that was being done was credited to their organisation. And I guess they were successful, because whilst I can remember the name of the organisation that funded the campaign, I can’t remember the name of the campaign itself. It’s an example of the way in which people’s voices can be obscured by the needs of large organisations. And whilst this particular instance of branding may have achieved its corporate objective, the failure to make the people themselves the dominant voice and message of the exhibit, is self-evidently counter-productive. It’s an example of failing to get the right balance and the importance of not forgetting what it’s all about.
I was reminded of aspects of this when I saw the news that the Equalities and Human Rights Commission and Mencap are going to be supporting Jeremy (Beth’s Dad) in taking legal action against St Andrews Hospital. On the one hand I thought great, this is exactly what Beth needs and on the other hand, I wondered if it had the whiff of a PR exercise on the part of the two organisations. Now you might say who cares? If it works for Beth, then that’s great. The two organisations are doing what they are supposed to be doing and they are funding the action, so they have every right to a little publicity on the back of it and that’s fine. The problem, as always, is a little more nuanced than that.
The difficulty with service providers being activists and campaigners is well recognised. Sure, Mencap have a pro-bono legal advice service that provides great support to families in high media profile cases and sure there is no theoretical reason why it shouldn’t be available to individuals and families who want to take Mencap to court, but I’d be amazed if it has ever happened and in practice it probably won’t. But by attaching themselves to the campaign of the indefatigable Jeremy and Bethany, Mencap will gain important PR in promoting the idea that all people with learning disabilities and their families will have access to good legal support should they need it. And just to be clear I’m not saying that Mencap shouldn’t be doing this, I’m saying (yet again) that they should separate their campaigning and support services from their provider services, so that if somebody using a Mencap supported living service wants to take them to court using their legal support service there is less likelihood of conflict of interest.
The situation with the Equalities and Human Rights Commission is different. Again, it’s great that the EHRC are supporting Jeremy and Beth, and that support will add significant weight to the campaign. There is also the hope that any legal action may establish a legal precedent and if that does happen then it will have been doubly worthwhile. The difficulty, if it exists, lies in the reasoning that underpins the EHRC’s involvement in Jeremy and Beth’s campaign.
A couple of months ago, Rightfullives and hundreds of individuals and dozens of organisations wrote to the EHRC inviting them to take action on the situation facing autistic people and people with learning difficulties who are trapped by the inpatient hospital system. The Commission replied on the 5th of November stating:
I have read your letter with care and concern and agree that it is entirely unacceptable that people who need care and support like Bethany, featured on the recent BBC Radio 4 File on Four programme, are treated in unsuitable and dangerous conditions. Recent coverage of deaths in ATUs has highlighted the grave breaches of human rights that can occur when people with learning disabilities and autism are held in these units.
As you know, we have recently held meetings with NGOs and lawyers and with individuals who have family members in inpatient units. We have listened carefully to their concerns and are now considering what action the Commission could take. The Commission has a range of potential enforcement powers and we will determine which would be most effective in tackling the human rights and equality issues that arise in light of the evidence that we have received so far. We are grateful for your letter and will take your suggestions into account in deciding the best way forward.
I will make sure you are kept informed about how we decide to move forward
As yet the EHRC haven’t committed themselves to making this issue one of their strategic priorities and we don’t know if the action that they are taking in support of Beth will end up becoming part of a strategy and a series of actions designed to confront this issue head on, or if it’s a single action that will have the dual purpose of, supporting Beth and Jeremy, whilst at the same time making it appear that the EHRC are doing their bit to support this community’s human rights by supporting an individual family.
The appeal of this latter approach and the temptation to use it is clear, by supporting a campaigner who is as effective as Jeremy, any organisation is likely to achieve maximum media impact with minimal input from themselves. And whilst none of this should matter to Beth and Jeremy, it will matter to the thousands of others who are currently struggling with the inequities of the current system of support, of which inpatient hospitals and the abuses that are inherent within them, are just a part.
So, if the EHRC are thinking of sitting back and letting everybody else do their work for them, then please don’t. The failure of Transforming Care and the ongoing human rights abuses of people who are detained in inpatient hospitals demands system wide change and system wide action. It demands that the EHRC does its job and that all of the organisations involved, take a long hard look at themselves. The ongoing abuse of people’s rights demands that every organisation involved in Transforming Care takes responsibility for the part they have played in the lack of progress and most importantly, that they do what it takes to put things right. Because no matter how much the different organisations might want to use individual stories to brand themselves as champions of hope, the truth of it is out there, in their collective failure to deliver meaningful change and the silent abuse of thousands.
The Tired Optimist 
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