Disability in Media and Politics

Bearing Disability: PIP Assessment —An Interrogation

A doll under a lamp, being interrogated. Feature image for Personal Independence Payment interrogation (PIP assessment).

On Tuesday, I went to an assessment centre for my PIP assessment (Personal Independent Payment). Some of you who have been following me for quite awhile now will know I have Cerebral Palsy and Anxiety.

Cerebral Palsy is a neurological condition that does NOT change but the symptoms can worsen as I age. It also increases my chances of developing other age-related disabilities such as arthritis, hearing loss, loss of vision and more.

Disability Living Allowance

Way back in 2013, when President Trump was just a joke made on The Simpsons and no one had heard of Teresa May, the UK had a disability benefit known as DLA (Disabled Living Allowance). Back then, if your condition never changed and you were getting the highest care and mobility components, you would receive a lifetime award.

This meant they didn’t assess the claimant because there was no point. The condition didn’t change, so they were still dependent on others and adaptations.

Now, with David Cameron and Teresa May in government, that has changed. Drastically. There is no such thing as lifetime award anymore. Regardless of your condition, you MUST go through these PIP assessments with a maximum of 3-year regularity, even if you receive the highest award and have a condition that will never approve.

I feel sorry for anyone with MS who has to prove time and time again they haven’t been cured by some guardian fairie.

The PIP Assessment

So, Tuesday. I drove to the PIP assessment centre, which is a 13-minute walk from my house according to the document they sent me. I went into the little assessment room, which looks like a GP surgery. And….

My brain froze. I forgot everything. Couldn’t speak. I couldn’t answer the questions. My dad had to answer on my behalf and even though she could see I was struggling to form my words, to say coherent sentences – she told my dad to let me answer. My dad only responded when he could see I was struggling.

I mean this is how the discussion went when she asked about my car.

PIP Assessor: Is it automatic?

Me: Yes. 

Dad: It’s adapted.

Assessor: What adaptations

Me: erm, theres a erm, stick on the *moves hand to mime steering wheel*

Dad: *starts to talk about my adaptions for me* 

Assessor: *Looks at me, closing her eyes for what seems a long period of time* Can you answer?!

Rephrased questions

The questions are designed to put you on the spot. They are not trying to find out what you can and cannot do. On the contrary, they try and trip you up or downplay your disability. If something doesn’t happen more than once in a day then you must not be disabled right?

I told the PIP Assessor several times I use convenience foods, I cannot use fresh ingredients, and still, I was asked:

Assessor: Can you cook using fresh ingredients?

Me: No

Assessor: Why?

Me: I have the use of one hand.

Assessor: Can you use your right hand at all?

Me: Not in a useful way.

Assessor: What do you mean by that?

Me: I can do my exercises. Get her to pick up a few things but if I cook using my hand I may not know if I burned myself, cut myself because I can’t feel anything.

Assessor: Why? 

Me:… I  … I just can’t….

It’ll be like asking why someone has blue eyes or black hair. Why their nose is a certain shape.

I just am disabled. I just cannot feel. Don’t know why I can’t feel.

I’d love to ask: why are your eyes green? Why is your hair brunette?

Put a number on it

They want specific numbers as well.

  • How many times does your pain flare-up?
  • How long can you walk without needing to rest?
  • Do you walk with aids?
  • How many times do you have to wear your splint and how long for?
  • How often is often?

Again, I’d love to ask how many times do you look in the mirror a day and find your eyes are still blue?

You don’t know? Not a viable answer… try again. It varies? Not a viable answer… try again.

I understand these questions for people who are not on the highest award, whose condition can change for the better or the worse. But, I have had this disability all my life. I have gotten used to the pain that I don’t actually notice it is there most of the time, just like someone gets used to the idea that their eyes are brown, or blue or green.

It’s hard to measure something you experience on a daily basis when you don’t have anything to compare it to. When you don’t know any different. When you don’t know what is ‘normal’ by their standards.

The so-called mobility test

Then they “tested” my mobility by getting me to put my hands beside my head, behind my back and touch my toes… Gross motor skills. CP affects Fine Motor skills and balance.

I was also asked to stand and balance on each foot, which I almost fell over. Dad caught me.

But she did not test my fine motor skills. My mobility with my hand, the flexibility of my fingers. The stuff that … you know… is an effect of my disability.

In addition to this, I was asked how well I can walk on a flat surface. FLAT. “Like you find at home.”

Most of the planet has dips, rises, bumps, different texture, weather conditions. But none of that came up. Is the government attempting to keep me housebound? Do they want me to not be able to leave the house?

We will NOT get to that later…

Each time I tried to tell her EXACTLY how something affected me: E.g Anxiety affecting my social life… I was told: “We will get to how it affects you later.”

We never did.

The whole PIP assessment scared me. I left the place shaking, feeling sick and on the edge of an anxiety attack – which I had further down the road.

What’s worse… IF they accept I am disabled enough, they will put me through this torture again. It could be in 6 months, in 12 months or it could be a maximum of 3 years.

I don’t want to go through that again. And people with lifetime conditions that do not improve should not have to go through this again. It’s horrid.

To keep my car, I would have to be assessed a minimum of every 3 years but 3 years is now the maximum you can be assessed. I’m terrified. Terrified for my car, for my independence, for me to actually go out, find a job and have a life.

I now I have to wait 8 weeks. I’ll keep you informed.

I hope you enjoyed this post. If you have, why not read some other PIP posts There are plenty on here: Pip Preparation and Applying to PIP just to name a few. And please do follow me on here, Facebook or Twitter.



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12 responses to “Bearing Disability: PIP Assessment —An Interrogation”

  1. I’m so glad you shared this experience. It’s so informative and means I can prepare myself for when I accompany other people to their appointments. I applied for PIP I think in 2015, but I was turned down before even getting an interrogation. Apparently I wasn’t disabled enough, despite the fact my mental disorder is debilitating in a way that means I can’t work, I struggle to even volunteer because of my anxiety. Depression makes it difficult for me to cook, clean, eat, walk, shower. I understand that I’d have to be reassessed regularly because mental health can fluctuate and change, but I’ve been ill for ten years now and I don’t think I’ll ever be “ill enough” for them to deem that I’m worthy of some basic financial support due to my disability. Sorry for the rant, your post just struck a chord with me.

    • Hi Rowan. Since the last two years or so, PIP have been forced to reconsider how they treat mental health and stuff, they currently owe 220,000 people benefits who they declined in 2016 and previous, so it would be worth applying again and if they turn you down, make a fuss! We can do it together 🙂

    • I’m so sorry this happened to you. It seems the process is designed not just to deter people from applying, but also from challenging a decision. Husband applied for PIP with my help in May 2017 and was awarded 0 points, and after a mandatory reconsideration (0 points awarded), we are now going to tribunal to challenge their decision. Our date is the 13th of July, so more than a year after we started this process.
      I would still try to apply for it and get some help to do it. Is there a Welfare Rights Service or Citizen’s Advice group in your area that could help you?

  2. Thank you for sharing this and I am so sorry it went like this. Thank goodness your Dad went with you. If something happens and they withdraw your PIP or lower your award certainly challenge it and explain that your anxiety was not addressed at the assessment!

    We had the similar kinds of questions asked at Husband’s assessment which we had at home. Husband can’t understand his own wage slips or bank statements, so I do anything financial in our house, budgeting, paying bills, paying the mortgage, setting up DDs. I have even filled in his time sheets in the past and helped him add them up. He does have a bank account and can withdraw money from an ATM. Twice during the assessment the troll assessing him asked if he could do anything else financial if he was shown how to do this, and Husband very firmly said no each time as he doesn’t understand it. We also explained this in great detail on the form.

    So naturally Husband was awarded 0 points for Managing Money which equates to ‘you are able to make complex budgeting decisions unaided.’ (!!!!)

    And what really gets to me is that when we have been through all of this, and if Husband gets awarded PIP, he will very likely have to be reassessed in three years. God help us if they award 0 points again and we have to go through this process again. It has brought out feelings I didn’t even know I possessed!

    • Please keep me informed about your husband, Silveryew. I hope it goes well. Hopefully all these appeals and setbacks the government is having for discriminating and unfair assessments help change PIP for the better in the future (Or better yet, they scrap it and introduce DLA again)

      • Thank you, I will! If the sky suddenly darkens on the 13th of July (irrespective of where you may be, in the world!) then it might just be me, having an aneurysm as things haven’t gone the way we wanted to ^_^

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