It’s time to get out of my comfort zone and get personal, because I really need a favour from you.
I normally leave myself out of my activism. I prefer the impersonal world of policy research. It’s not that I think this is a better way to achieve change necessarily; it's just that I’m a natural introvert and a bit of a geek.
But today is a severe ME day for me. The sleep thief came in the night, parked its truck on my chest, set energy-sucking leeches onto my limbs and poured sand through my eyesockets into my brain. So the researcher brain is on strike.
Right now, posting up a selfie and dictating this into my smart phone is all I can do to refuse invisibility.
Through all the reports I’ve written (some published and some not) and the policy influencing circles I've dipped into I came to one stark conclusion. I’ve covered ESA, WCA, PIP – those acronyms that haunt our lives - as well as social care and employment support. And I realised that when it comes to the landscape of disability policy, chronic illness is not even on the map.
Like most people, politicians and policy makers have a crude understandings of life outside their experience. To many, “illness” is something you either recover or die from; while “disability” is about missing or defective limbs or senses. The notion of chronic illness doesn’t even figure.
Some groups of disabled people have made strides in overcoming this. There are growing self-advocacy movements for mental health service users, people with learning disabilities, neurodiversity, and even dementia. They also have well established professional charities who send bright, ambitious and politically savvy young people to lobby government on their behalf.
And what do we chronically ill folk have? We have our contested diagnoses, our stigmatised identities, we have our coping strategies and our online support groups. We have small charities focused on research and treatment for our specific conditions. But we have no one sitting around that table with those who design the policies to represent our needs, our interests and our rights. We do not exist as a group broader than our diagnoses.
I believe we "spoonies" are a constituency with common interests. You may love or hate the term but you probably know what it means and whether or not you are one. What I'm trying to do is get us organised so we have a collective voice. I want us to have a seat at the table.
That is going to be hard to achieve.. How do we overcome barriers like not being able to leave our homes to get seen and heard and persuade people? That is the burning question we will be addressing.
But if you’re still reading this you can help take the first step right now. So please, do me a favour and sign up to this mailing list.
This is an official, lottery funded project, where numbers count. We won’t tear the walls down in a day, but by subscribing to this project you are standing up to be counted. It is a first step to saying that we are here, we are many, and our lives matter.