Here’s a turn up for the books. I want to sprinkle a little bit of praise on to the infamous Downs Syndrome Bill that has finally made it through Parliament and is now law.
I wrote about the Bill when it was first being lobbied and got slaughtered on social media for my views. To be honest, I still feel pretty much the same, several months on. Despite, all the publicity and debates, I have no idea what the purpose of the Bill is and it seems such a flimsy, worthless document that I cannot, for the life of me, ever imagine it being used in a court of law to fight someone’s corner. There has always been a sense that there is a hidden agenda to the Bill and that feeling grows stronger with each day that passes.
As well as the lack of content, the other thing that the Bill has come in for a lot of criticism over is the brutal way that those behind the Bill dealt with anyone who they perceived as a dissenting voice. Anyone who asked questions received ruthless, and at times, abusive responses. Or complete silence. There was never any attempt to explain the opaque elements of the Bill, far less any attempt to win over the doubters. Blanked or belittled was the weapon of choice.
“Crikey Mark. If this is you praising the Bill, I’d hate to see you being critical of it.”
Nevertheless the Bill succeeded. Fairly smoothly too. We can speculate until the cows come home about the murky dealings going on behind the scenes, but I suggest that there are aspects of the Bill’s success that campaigners need to reflect on. Reject them, by all means, but we can’t ignore that the Bill is now law. Other proposed bills and campaigns (some that I’ve been involved in) have not succeeded despite the expertise, integrity, commitment and nobleness of the cause. Is there anything to be learned from the DS Bill?
One element that I think the people behind the Bill need to be praised for is the positive way in which the people who the Bill was aimed at, and there were several people with downs syndrome who became the “faces” of the Bill, were always presented in a positive light. The Bill was never interested in deficits. The narrative around the people’s lives was relentlessly cheerful and optimistic. The narrative was never about victims or the oppressed. Now, some might argue, rightly imo, that that led to an unbalanced representation, but I think there is less of an appetite generally for an horrendous story. A story of someone held in an ATU for many years may get some media coverage and that coverage usually leads to a couple of days of outrage, but there is very little evidence that the outrage leads to a positive outcome for the person at the centre of the story. A review perhaps; a concordat maybe, but no real action until the next story comes out with more outpourings of outrage. I don’t know whether that was a tactic decided by the DS Bill people, but they never went down that route. I can’t claim that not going down that road led to the successful outcome, but I do wonder whether it played a part.
A second (and I can’t say how much this sticks in my throat) aspect of the Bill was that it gathered support from the most unlikely sources. Perhaps it’s too obvious to say that if you want a Bill to be passed by a Tory government with a huge majority, it might be useful to have some Tory support for it from the outset. It might go against all of one’s political instincts, but that may be something the campaigner has to bracket off, if they are to be ultimately successful and get their Bill passed. My sense is that the DS Bill crowd instinctively knew this and exploited it for all it was worth.
Finally, and I suspect this may be the most unpopular piece of praise I want to acknowledge, is that the exclusivity of the Bill seemed to work in its favour. Many of the complaints about the Bill from day one were from people stating that the Bill was not inclusive. And they were right. But the Bill never claimed to be inclusive. It rigidly stuck to it’s idea that this was a Bill for people with downs syndrome and didn’t once entertain the idea that other people with learning disabilities, or autistic people, or physical disabilities should come on board. There was the occasional nod to the possibility that the Bill would ultimately benefit other groups, but I suspect that was just window dressing and only offered so as not to be seen as complete cunts. They stuck to their guns over this point and achieved a positive outcome.
I wrote in the first blog that I didn’t have strong feelings about the “exclusivity” of the Bill and got a lot of criticism from people that I have worked with on other campaigns. Sorry to upset them, but now that the DS Bill campaign is over, my feelings are just the same. Perhaps even stronger. We push every time for a campaign to include everybody. We put enormous time and effort into getting everyone on board. I have a nasty suspicion that achieving full inclusivity may be a Panglossian idea. For example, Rightful Lives has been very clear from the outset who they are campaigning for. However, every project we have run has been challenged by someone saying, “Why haven’t you included people with…..” A few months ago, we were given Neville Southall’s Twitter account for an evening to try and engage more people and I spent most of the evening and a few days after dealing with a small handful of autistic people who weren’t happy that in our exhibition, Rightful Lives had included people with learning disabilities alongside autistic people. Quite frankly, they didn’t want to be associated with the learning disabled. Now we can argue all we like that that is a churlish viewpoint to take, but it exists and every campaign has to tackle that dilemma at some point. Rightly or wrongly, the DS Bill bypassed all that by nailing its colours firmly to one particular mast and never wavered from that. The disability world, possibly more than any other identity group, is a very broad church and it needs a huge vessel if everyone is to come on board.
Anyway. Sorry if this has pissed you off. I know that after the Every Death Counts nightmare, I’m still trying to process my thoughts about campaigning. I suspect that campaigning in 2022 is a lot different than it was in 2010 and that things that worked in the past, may not cut any ice in the present. I don’t have answers, but this blog reflects the sort of questions I’ve been asking of myself.