Sunday Short: Running the gauntlet of a benefits appeal

Screen shot of a tumblr post. Transcript below.

Transcript:
[theconcealedweapon] Some people can lift 200 pounds. But if they carries it everywhere they want for an entire day without ever putting is down, they'd severely tear their muscles and cause permanent damage to their body.
Some people can enter a 140F car in the summer to get something out of the car. But if they stayed in the car, they'd die from the heat.
Some people can hold their breath underwater for 30 second. But if they tried to go scuba diving without the necessary gear, they'd drown.
Clearly, someone doing for a short period of time does not automatically mean that they can do it indefinitely with no problem.
So why do people assume that if someone can walk for a few seconds, they don't need a wheelchair?

[filthybaguette] HOOOOOOO SHIT THERE'S THE TRUTH

[Skeletonmug] THIS THIS THIS

it goes further that wheelchair users too.

It's a very important issue with people who can't work "normal" jobs due to chronic pain and chronic fatigue.
Sure I can go to a friend's house and talk and maybe play a board game for few hours. But a) I'm not doing that without incurring pain and fatigue and b) that is not the same level of exertion as working even a part time job.
Sure I can write a blog posts  some weeks but I still incur pain and fatigue and I can't do it everyday. It's not the same as working even a part time office job.
Sure I can walk to the shop and back using mm [sic] cane but I can't do it at any given time without notice and I end up with increased pain and fatigue. This is not the same as being able to walk anywhere I want whenever I want.
You, dear judgemental and biased assessor, could walk the length of Hadrian's wall in 5 days*, but lemme tell you, even if you have trained for it and even if you are fit and healthy, you will be exhausted and in pain by the end of it. But you can do it. So from that I can of course extrapolate that you can walk 84miles up and down literal mountains all the time whenever you want, one after another with no rest and of course you'll be fine and the pain and fatigue will be trivial and [not] eventually prohibitive?
No? Then you can't decide that because I can walk to the shops and back using my stick and incurring pain and fatigue that that means I am fit to work a regular job or have zero mobility issues.
*I have actually done this before I got stick. It was way tougher than I thought. 

This is a fairly old post now but it popped up again today and it couldn't be better timed.

This post is going to be unusually candid and personal but I think it's important to share my experience with applying for PIP (Personal Independence Payment).

The quick rundown of the timeline is as follows:

• October 2016 - receive a letter from the Department of Work and Pensions stating that I will be being moved from my Disability Living Allowance on to PIP and need to apply for PIP by November 2016.
• November 2016 - Face to Face assessment with DWP assessor
• December 2016 - receive a letter from the DWP saying that I have been awarded the standard rate for mobility at £21.61. This is over a 75% decrease in what I was receiving in DLA and a demotion in grade.
• December 2017 - Request documents so I can submit what is known as a "mandatory reconsideration".
• January 2017 - Date for mandatory reconsideration passes without me receiving the requested paperwork. 
• January 2017 - finally receive paperwork
• February 2017 - Submit mandatory reconsideration 
• February 2017 - Receive refusal of mandatory reconsideration.
• March 2017 - Submit formal request for appeal and tribunal
• February 2018 - Receive letter with date of tribunal and option for submitting supplemental information. 
• April 2018 - Appeals Tribunal held. Decision given. Awarded an increase to include Standard Rate Care. This is a 100% increase from the original award.

The reason this is being paired with the above tumblr post is that so much of the application, assessment, reconsideration and tribunal is about repeatedly reminding and convincing complete strangers that being able to do one thing does not mean that I can do everything all the time.

There is a key phrase in the guidance and scoring criteria for PIP and other disability related benefits: "reasonably, reliably and repeatedly".
What this basically means is can you do it with reasonable levels of pain, discomfort or distress, no more than an able bodied person would be expected to endure; that they can be expected to reliably perform the task in an expected manner; that they can repeat the task in a reasonable time frame.

Despite this being specifically in the guidance for PIP applicants, it seems that any assessors and professionals involved in decision making don't keep this in mind or have a poor understanding of what it actually means. There is also a tendency for people to think in very discrete terms and not consider that doing thing A will also have an impact on your ability to do things B,C and D. It's not just about doing thing A again and again.
On top of that it's recognising that things A, B, C, and D may have different stresses on the system or difficulties associated with them. Sometimes it helps to think about it as a game of Tetris with really big awkwardly shaped blocks. Each day you may only be able to fit in one big awkward shaped block. Or you can fit a B block and a C block but that's it, not other. Of course you also need to consider the long term impact of activities or situations. Symptoms don't stop and our bodies don't resent at midnight ready for a fresh day.

This is why my PIP appeal was brutal. Because I have to repeatedly, with every activity, from cooking a simple meal to walking to a bus stop remind them that even if I can do it once I can't do it again and again. Even if I said I can start cooking a meal, I can't necessarily finish cooking a meal or do anything after cooking a meal.
Additionally if it can only be done with pain, fatigue, distress, or confusion then it is not being done in a reasonable fashion.
Even communication. Yes I might be communicating with you now but can I do it reasonably, reliably and repeatedly.

It is ridiculously exhausting to have to do this again and again. It's not just the frustration of repeating oneself, it is the pain and distress of having to justify your experience to people who are absolutely failing to grasp what you are telling them.

Disabled and chronically ill people really need able bodied people to actually consider and appreciate the ease with which they do things every day and how that is not the experience of disabled people. More than that we need able bodied people to listen to disabled people and respect and understand that we are not exaggerating. We are trying to be as open and frank about our experiences as we can. It we say we can't do something it's because we can't. It doesn't matter if we did it yesterday or we did something that you judge to be similar. If we say we can't do it or we can not do it reasonably, reliably and repeatedly then we can't.

If more people understood this then people wouldn't have to go through 16 months of intrusive, distressing and at times physically and mentally demanding scrutiny.