Getting Rejected for Disability Aid

At the end of my article "Too Disabled to Employ, Not Disabled Enough to Help", I was about to apply a second time for disability allowance, following countless unsuccessful attempts to get back into the workplace.

The process this time around was very different from my previously unsuccessful attempt. Instead of filling out a simple form online and awaiting a face to face assessment, I was sent a booklet almost as thick as the bible to fill out and send back before awaiting a telephone assessment.

I understand that this is a COVID-safe way of doing things but good lord was it stressful. It took me a good few days to fill out the essay answers that every question required.

Of course these forms are designed to cover all different kinds of disabilities, but having a dynamic disability such as AS does make it a bit complicated to answer these questions.

As things tend to change on a day by day basis  (sometimes even faster) I decided to describe what happens on my bad days and explain the more extreme things that occur during my flare ups.


I thought it would be a good idea to prepare myself for my assessment, just in case my beloved brain fog came out to play. I had to wait a good 4 months to receive this appointment; I didn't want to blow it and have to wait again.

I went through all of my answers in the application form and wrote down bullet points for each topic. I figured this would make it a less painful ordeal for the assessor and put less pressure on my nervous brain.

I have a pretty strong South London accent and as people from my neck of the woods don't have a great reputation when it comes to working and applying for benefits, I decided to try my best to speak as close to Trevor McDonald (a posh BBC news presenter) as possible.

Realistically, I probably sounded exactly the same, just without the use of slang but I think my mama would have been proud of my faux posh voice and the manners that I used.

The call

My phone rang at midday, which felt very early as my sleeping pattern was in absolute tatters due to the combination of pain, fatigue and a lack of reason to wake up on account of my joblessness.

I took a deep breath and answered the call. The assessor was a very bubbly and friendly lady which made the experience a lot less daunting. We even joked a bit with one another during the interview.

It appeared that the notes I’d made were a great idea as she went through each section in exactly the same order as I had written them down. This made giving answers less painful.  I also explained a bit about my diagnosis story and the situation I had found myself in and she seemed pretty sympathetic.

I felt a little emotional after the call was over. Saying all of these things out loud to a stranger really hit home just how much pain and struggle AS has brought into my life.

Nevertheless, I felt that things had gone as well as they could have done. Of course, as soon as I hung up, I started thinking of a million other things that I wished I'd mentioned but I felt that I hit the main points pretty well.

The decision

I was told to expect a response on the decision early in the new year, so I was pleasantly surprised to see a letter arrive in the first week of December. However, after opening the letter my mood soon changed - I had been rejected.

Given the Government’s reputation of only caring for the wealthy and able bodied, I was not surprised. However, I was shocked by the manner of the rejection. The report contained a score card where 12 everyday activities were assessed and given a certain amount of points depending on how much help they believed I needed with each. These included things that I have real struggles with like moving around as well as things that admittedly my AS does not cause any troubles with such as reading.

Despite all of the pain and struggles that I had vividly explained, I was scored ZERO for every single section. I couldn't believe it - the last time I received such an abysmal score in a test was back in my high school maths class. I had poured my heart out about my pain and problems and they didn't deem it worthy of a single pity point.

The reasons why

A breakdown of the reasons I was rejected followed this shambles of a score card.

Reading this honestly infuriated me. The part that angered me the most was that my politeness to the assessor AND my preparation was used against me.

It listed "You built a good rapport with the assessor" as a reason for refusal. Not only that but it also went on to say "you displayed adequate memory throughout the assessment." I was literally reading off the sheet of paper that I spent hours preparing beforehand and even this was only good enough to be deemed as "adequate."

Clearly the right way of going about things would have been to be actively be as rude as possible on the phone and making no preparations to help myself and the assessor get through the discussion.

Another fantastically ridiculous line read "You can walk at a slow pace using a walking aid for 10 minutes which suggests you have good leg power." By this logic I should be awaiting a call up to the next Olympics.

Moving forward

I will be appealing this decision, but I don’t have high hopes of success. In the meantime it leaves me in a sticky situation. I really do feel as though I’m too disabled to employ but not quite disabled enough for the government to help. Can anyone else relate? I’d love to hear your story.

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