This is a blog about disability,* so I’ll start it by saying I don’t have a disability. I have layers of privilege that come with being non-disabled, and not having to fight at every turn against a society that does not understand, and often does not try to understand, what it’s like to live and work with a disability. I have learnt a lot from some campaigners who are disabled and who are carers for disabled people about that fight. I have been privileged to work with them and to learn from them, even though it’s not their responsibility to school me.
I’m writing this in response to a couple of things. Firstly, I’m currently meant to be writing an essay on power, which has made me think a lot about access; if you’ve worked in policy and public affairs you’ll know that some organisations and groups seem to get more access than others, and some issues will get further than others. It can be a struggle in a crowded market place to get your item on the agenda. Resources, relationship-building, history, timing and a myriad of other factors can make it possible, but there are structural societal barriers that make it more difficult for certain groups to make their voices heard. The voluntary sector has a key role in representing and amplifying the voice of groups, but itself works within this system, and organisations have to make sure they’re representing their particular interest group to the best of their ability. Competition for political clout among charities is an interesting if sometimes uncomfortable topic, and one I might come back to in a more academic moment.
Secondly, and more practically, I’ve been reflecting on some stuff I’ve heard about and seen when working with fellow campaigners, about the things that conspire to tilt the playing field against them (one campaigner described it as ‘sloping uphill’). Things like the extra costs of getting around – usually by taxi, often by black cab, and often with a battle to get any money back. If you’re in a professional role, Access to Work doesn’t always cover the cost of travel to meetings, and you have to pay upfront. I’ve heard one story about a disabled person fighting for months to claim taxi expenses back having been asked to sit on a patient representative group, because the internal procurement processes were so complicated. It costs a lot to live in this country if you have a disability – on average £550 extra per month – so the hidden costs of being a disabled campaigner can be prohibitive. When you’re constantly worried about your benefits being cut, it can be doubly difficult to balance those costs.**
Then there is the issue of accessibility. Last year the Houses of Parliament won an award for its ‘outstanding disability performance and commitment to disabled people’, which some of my pals found pretty funny (in a really not-funny sort of way). I will say I’ve met some lovely and supportive staff at Parliament. But I have also been with campaigners who have had their disabilities questioned by parliamentary staff because they don’t have an immediately obvious disability (they need hardware for proof, apparently). I have walked the ‘accessible’ route with a colleague with mobility problems – you have to go round behind the bins, it takes bloody ages, and you’re not allowed to sit down and rest because of security issues, which all makes it rather inaccessible. I know of times when people haven’t been able to attend events or debates because the room isn’t accessible or the classic ‘the lift is broken’ situation, and you wouldn’t believe the battles involved in finding accessible meeting spaces (unless you’re disabled or a carer or an organiser, in which case you probably will). I have heard about the impact of not being able to get to meetings, debriefs, photo calls, all those networking chats that happen over coffee because it takes so much longer for your security escort to show up, for you to get around, and because other people don’t make the time. I’ve had to be told about the fact that sometimes it involves a lot of extra physical and psychologic effort to engage, not least if you’re having to explain your disability all the time, which means people might not be able to engage for as long, or in the same physical space, or using the same methods. I’ve also recognised how often I or others haven’t taken this into account.
I write this as an ally, because I think it’s important for allies to write. It’s more important for us to listen, to do things differently and to make sure things change. People should not have to battle at every single stage for even the opportunity to be listened to. But they do, and they’ve been doing it for too long.
*This is actually a blog about some types of disability – predominantly physical. Campaigners with learning disabilities and mental ill health may share some experiences or may have unique ones, good and bad. I don’t know enough about it though, and I don’t intend to guess. Would love to hear from people who want to share though.
**I’m also very cross about PIP today. Again.
I wrote this blog with the permission of the people who’s examples I’ve used, but I don’t want to speak for them, or any other disabled people. If you’d like to share your own campaign experiences, or to challenge or add, please feel free to do so.