When Will We Rise Up?

“Rise up Evie Smith”, I yell.

It’s common place to be asked to give feedback on an experience when you purchase  or participate in something theses days. With my training background, I know important and useful this is to how I can improve and redesign things.  But hat about when you feel the feedback is just for a tick box exercise that will bring little or nothing to change the bigger picture.

I recently had this offer/dilemma to give feedback on my experience of going through my Personal Independence Payments (PIP) Assessment. To be honest this blog is  already about a thousand words too long, sorry sausages, bare with me:……

It’s important to put my little act of resistance in context.  That is the context of this governments ever increasing erosion of our rights and our independence. I (and hopefully we?) know and see this erosion all around us. All these changes are a systematic wrong to fit an ideology of greed and selfishness. It smells, feels and looks wrong. Even if you disagree and think the gornment is great (???) you must sense some of us are experiencing something that isn’t quite right?

Harsh? Unfair? You may say I’m being a bit bias? Well, if that is a bias toward the side of equality, justice, respect & dignity, then yep. But then I realise why the bias is ther. My rational (not bias) response as I reflect, is directly as I experience the Closure of the ILF (Independent Living Fund), the tightening bureaucratic restrictions and changes to Access to Work. Then outside my direct experience, but with my loved ones, my friends, their families, other disabled people being put through care cuts, benefit cuts, the bedroom tax, Working Capability Assessments and Universal Credit hasn’t even got half an evil claw in yet. The whole agenda needs ripping up, re-directing and far more urgently than anything Brexit could throw up.

To put it straight, I don’t want a new tweaked central Care system linked to health. I want to be able to live an independent life with choice and control where I can contribute and participate in the world around me…as an equal.  To do that I need support…don’t we all!

All in the name of Austerity, a strong economy and to aid the rhetoric of ensuring as a great country we look after the most vulnerable/those with greatest need. And yet it’s ok to have a limitless pot to piss it up the Brexit wall? Well you only have to google any of the above or listen to the news to know these actions are at the least having the biggest and most detrimental impact on our lives.

I panicked that my response might be my age, “moany an old bloke” period of life.  Then I pinch myself and realise it actually is really happening.

As a small time campaigner/fighter (there are many greats far more effective than I) of injustice/discrimination  theres always a sense of “why aren’t more people rising up”, how can we resist, be helpfully non compliant, not participate in this game we are being forced to play. I want to play a game with fair rules, agreed with negotiation and agreement. A game I can play with fairness and equality, one that I can participate and contribute too.

So back to the plot, my invitation to participate in a focus group looking at my experience of PIP for £50. In the context of all the above and along with the short notice, lack of financial recognition of my professional time, PA costs to be there and the feeling that I wouldn’t be able to get across half of how bad the whole experience was in terms of access, bureaucracy and my self esteem/confidence, I decided to decline, but tell them why and was happy to have it on record & is why I am sharing it in this blog.

My anger/frustration/beliefs wasn’t with the research company, the guy was nice enough. My need to adequately respond to this feedback was bigger than the opportunity to be complicite in ticking the DWP consultation box. It was very much about my anger/frustration/etc at our governments policies & actions. Heres me letter, I’ve removed the researchers name.

Subject: Re: Confirmation of group discussion about your experiences of completing the Capability for Work questionnaire [6060]
Dear xx,

After serious consideration, I have decided I cannot participate in this piece of research/feedback to DWP.

The whole of my experience was so fundamentally negative, inaccessible and difficult, that I believe the whole pip system needs drastic change to meet & reflect the real needs and lived experience of Disabled People.

If the dwp truly understood the practice of real co-production this would be a positive start that might change the culture towards Disability equality and supporting Disabled People to live independent lives.

Although I do appreciate the token of £25 for my time, as a disabled person this amount doesn’t reflect the true cost of my time & support needed to attend.  It’s a very low rate as an incentive given the costs to attend and perhaps current research rates.  In short, it reflects part of the problem in the DWP not recognising the true additional cost of disability, let alone as an ‘incentive/gift’.

I would be happy for you to use this as anonymous evidence or to chat further if there was a real commitment to change to improve the lives of Disabled People particularly in the current climate and context of policy impacting on our lives (closure of the Independent Living Fund, restrictions to Access To Work).

Thank you for contacting me, I am of course happy should you need to contact me for any clarification.

We must join together, united & rise up, be non compliant wherever we can to inequality and unfairness and continue resilient and resolute in seeking inclusion, equality & justice together as disabled and non disabled contemporaries.

Right, cup of tea Sausages! xx