Guest post by Julie Howell (Giraffe Sense Public Speaking), who last month spoke at an ESRC symposium hosted by the University of Leicester – ‘Mediating Disability in Broken Britain: The Role the Media Plays’.
“The true meaning of life is to plant trees, under whose shade you do not expect to sit.” Nelson Henderson.
‘Choices and rights’. When I was in my teens this was disabled people’s rallying cry. Thanks to Mike Oliver and the late Vic Finkelstein we finally had our social model of disability and now here we were singing our anthem penned by rights activist Alan Holdsworth aka Johnny Crescendo.
Disabled people were becoming more visible in public life. Young turks like myself had role models to aspire to and life looked quite hopeful. On reflection, hopeful may not be the right word – we were living under Thatcherism after all – but there was a lot of positive energy about and our appetites were whetted for change.
A few short years later, spurred on by the gathering momentum, I would have my own brief moment in the sunshine. In the early 90s, Tim Berners-Lee invented the web and I was to be part of the movement that recognised how this new technology could make disabled people’s lives better, a prophecy we swore to make our reality, all obstacles be damned. For the first time it really did feel like disabled people would finally participate as full and equal citizens of the world.
Fast-forward 15 years. Pick up any newspaper and pinch yourself. What happened to optimism?
People get nostalgic about the 80s for lots of good reasons but not for a return to the miserable rhetoric that would again label disabled people ‘scroungers’, ‘benefit cheats’, ‘victims’ (I worked alongside colleagues who lobbied for disability hate crime legislation… it was never supposed to be a stick to beat ourselves with) or ‘superheroes’ (thank you, Paralympics). Any time a disabled person appears on TV it feels more like characterisation than it ever did before.
This ‘two steps forward, one step back’ progress of disabled people’s rights reminds me of a Star Wars At-At. It is moving forward and it is mighty, but to look at it lumbering along you’d be forgiven for thinking it was walking backwards. We have been forced into using the language of want and despair to describe ourselves again. Choices and rights? Not now and not here.
In November I was invited to address an ESRC symposium hosted by University of Leicester entitled ‘Mediating Disability in Broken Britain: The Role the Media Plays’. I didn’t want to talk about hate crime or benefits. Instead, I chose to reminisce with the disabled audience (my peers), most of whom would label themselves activists, about just how mighty we really are when not weighed down by the onerous burden of worrying about how we’re going to feed, clothe, shelter and keep ourselves from harm in civil society. If we put these painful and very present distractions to one side (and I understand absolutely that many cannot) then we/you are the next generation who will drive the cause of disabled people forward.
It’s really easy to get caught up in the pain politics of now and forget both how far we’ve come and where we’re going next. Just as I know that I stand on the shoulders of the likes of Mik Scarlet and Geoff Adams-Spink (I don’t think they mind too much), those of us now using the web to blog and to campaign on the issues that are relevant to disabled people today stand on the shoulders of we who did what was needed to make the web accessible a decade ago. A web available to all wasn’t a given. Many people worked hard for this. Take pride in this huge achievement. Our gift to you.
All those disabled people who are online activists today can only be so because of the work put in by the previous generation of disabled activists. Take heart from this. Just as you stand on our shoulders, and we stand on the shoulders of our forebears, so disabled people of the future will have you to thank for the quality of life they will enjoy. But here’s the rub: you will be very lucky to enjoy the fruits of your own labours. It isn’t a given that any of us will live to see real, sustained, permanent change in our own lifetimes.
Does this thought depress you? If it does, then you’re going to find life as a campaigner very hard.
All campaigners share one curious goal: a desire to make ourselves redundant. As one achievement is secured so we move on to the next. If we ever look back, it’s only to check on the achievements of our forebears lest we waste time repeating the mistakes they made or fail to learn from their lessons. Don’t expect to be thanked, or even acknowledged, for the positive changes for which you are truly responsible. It just doesn’t work that way.
Having been in this game for a couple of decades I’ve learned a few things about campaigning:
- if the change we seek comes too easily it probably won’t be sustained;
- the people we seek to influence will never give us credit for influencing them;
- ultimately, it is huge social change (e.g. the impact of The Great War on the efforts of the suffragette movement) that will make the lasting difference.
However, the work that campaigners do is critical. When the world is ready to accommodate our agenda it will know what to do thanks to the research and development campaigners have already undertaken. For we are the ones who put in the long hours developing the rhetoric, perfecting the business cases, going through the proposed legislation with a fine-toothed comb. We may not be credited with the outcomes but we will sleep soundly in our beds (or our children or children’s children will) knowing that we played our part.
Campaigning is a vocation. A state of mind. A long game. Not so different to my own condition, MS which, before it was discovered in 1868, was sometimes referred to as ‘the slow disease’. This sums up MS perfectly – it is not a condition of high drama (which is also why the media does such a poor job of representing people with MS, I think). It takes its time. In fact, it takes best part of a lifetime. Not a death sentence, but a life sentence.
It takes a special kind of person to be a disability rights campaigner. They are people who will strive for change knowing that they may never enjoy the fruits of their labours. As such, they should be encouraged and cherished because it is on their shoulders that the disabled people of the future will stand.