On Tuesday, I went to an assessment centre for PIP (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.
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 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 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.
So, Tuesday. I drove to the 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. I 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.
Assessor: Is it automatic?
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!
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 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: 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.
Me:… I … I just can’t….
I mean 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. I don’t know why… I can’t feel, why are you’re eyes green? Why is your hair brunette?
They want specific numbers as well.
- How many times does your pain flare up?
- How long can you walk without needing to rest?
- How many times do you have to wear your splint? How long for?
- How often is often?
- How many this – how long that.
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.
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?
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 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.
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.